I ♥ Tucker

Back to school.....

2009-10-10T09:02:00.002-05:00

Well, we have been home one month and Tuck is back to school. Our methadone wean is gone and we are slowly getting back to normal. Thank you so much for following and contributing to our journey. You can follow us at http://www.bryantfamilynews.blogspot.com/. Regular updates are put there almost daily.

TUCKER's COMING HOME!!!!!!!!!!!!!

2009-09-04T19:12:00.001-05:00

Tomorrow we HEAD HOME!!!!!!! Tucker too......with all our stuff.....with 9 medicines.......a stroller and a car seat.......with oxygen while we sleep.......and lots of strength yet to gain. Our flight leaves Boston at 150 getting into KC around 6pm. Daddy gets to work a day shift to come and get us, then it is a quiet, getting used to home kind of night.

I do ask, not to be rude or anything, that everyone hold the visits and the phone calls until Sunday atleast. Tucker will be out of his element, he is still pretty shaky and we have lots of settling back in to do...not to mention figuring out the medicine schedule for home and getting it all organized so as not to mess anything up.

We will be followed by Mercy very closely the rest of our recovery, with appointments each week for a while. But we are so glad to be coming back to KC.....

I'M LEAVING ON A JET PLANE, DONT KNOW WHEN I'LL BE BACK AGAIN!!! LEAVING...headed home.....not in BOSTON anymore.......Going back to KS with Toto.....Acting like a baby and heading out.........you know them all! -Mommy!

And Daddy is excited to have his family all together again.

Homecoming....

This week has been quite a joy to me. Not only is Tucker and Karen coming home on Saturday, our son Brett returned home Wednesday from his Marine training. He broke his foot and had to stay an extra month, so it is a joyous time in the Bryant home.

I know we still have months of recovery at home, but I wanted to thank everyone for their support and donations to my family. We couldn't have done it without the thoughts and prayers of all our family and friends and newly found friends.

Thank you from the bottom of our hearts. We love you all!!!! -Daddy

Step Up For Down Syndrome

2009-08-27T14:31:00.012-05:00

It's that time of year again. The annual Down Syndrome Walk, Step Up For Down Syndrome. The walk will be held at Arrowhead Stadium on Saturday, October 24th, 2009, from 9am to 1pm.

The day is filled with family fun activities including pony rides, crafts, inflatables and clowns,d food! Come out and support Tucker's Troupe and walk for Down Syndrome. Proceeds from this event go directly to individuals here in Kansas City.

Click Tucker's Troup badge to sign up. A $20.00 donation gives you a shirt and access to the walk on the 24th of October.

Last year we had a great turnout and we hope to see everyone there again this year!

Swallow Study, Prayers Needed

2009-08-25T08:27:00.000-05:00

OK, so tomorrow is the swallow study. WE NEED PRAYERS....we need good results, we need Tucker to fly through this...otherwise they are talking a Mic key button again. PLEASE ...man I don't want to go down that road again. I pray that it was a fluke and he flies through it, I pray that IF anything needs to be done it is to thicken liquids but eat regular. I thought we would go home with a tube down his nose until he got stronger if the results were that he was aspirating....Dr Lawson says that the tube down the nose will only mess up his swallow even more that he would suggest a belly tube placement...which means another surgery, another intibation, which means more time in Boston. Eating and no i.v meds are all we need to accomplish before going home....there are no more i.v meds now, as of today...and the eating was no issue until they thought he was aspirating....which they thought was happening because of the wet xray and the "junky" sound.. ALL of us know, Tucker always sounds junky, it is normal for him. Lawson said that they rely on the parents to know what is typical and what is not and he too thought maybe it was a singled out, tired boy being off the c-pap mask for so long, that caused the wet xray and not aspiration...again we will know tomorrow. Lots of good vibes this way tonight...PLEASE

I also asked about getting us home to Mercy...finishing our recovery there. He said that is something they do a lot of and it is definitely something he would bring up to our cardiologist..I got the impression, however, that is something that would take some arranging, not something that we could decide and do the next week....I may be wrong. It will be addressed again very soon. I want to be HOME...even if that means the hospital in KC!!

Tucker was mad at me when I first showed up in the room. He looked at me as if he didn't know me....I loved on him, kissed him lots and he finally broke it loose. He still loves me..THANK GOODNESS! He is resting now after fighting it for hours. We get to give him a tub bath tonight which will be nice. I would like to add that to his nightly regime so he knows it is about time to go down for the night. Just like being back home for those 2 weeks, I fell right back into it, as if I had never left.

Tucker Leaves The CICU

2009-08-25T08:25:00.001-05:00

I know yesterday mornings blog was labeled "Darn It!!", but we actually got to move to 8 East, the floor, last night around 6:30!! Our doctor came in and said "I have been looking through your chart and there is no reason for me to hold you here, so we are going to move you." Of course my question was "Tonight!!" And the answer was YES!!! So, we packed our things up in like 15 minutes, and believe me, we had a lot of stuff. When we left, you should have seen the Tucker supporters. All of the nurses and the parents that we have become friends with were all waving as we marched by. Since our room was the very last one, we had to pass them all. Tucker was his usually friendly self, waving to them all. Is so amazing how these kids touch our hearts. Most of them can't even talk yet, but they sure speak to our hearts. We pray that each and every one of them make to the floor soon.

So, we had our first night in the regular room. It wasn't too bad, just getting used to the new sounds and people in and out of our room at all times of the night. Tucker slept fine. He went to sleep around 9:30 or so. We finally have a TV that we can play his videos on and he seemed to really enjoy it. We were very luck and have a private room. I guess they figured we have spent hundred of thousands of dollars, we should at least get a private room. Thank goodness for insurance!!

Karen comes back today, she will be here around noon today and will hopefully only have to stay a couple of weeks. My goal while she was gone was to have Tucker in a regular room before she returned and we have met that goal so far. (Don't want to jinx anything, so that's all I have to say about that). I will be leaving tomorrow morning around 10 so I can be back home with Hunter, who starts high school today, and get back to work.

I didn't get a very good video of us leaving the ICU, but I have a little one of the nurses and assistants getting us settled into our new room, enjoy!! The other picture is of our nurse Katie. She went with us for our daily walk to the park.

Mommy Back To Boston

2009-08-24T08:24:00.001-05:00

As I approach my "lift off" back to Boston I cannot believe how much time we have spent there. I never thought it would come to Todd and I switching off and on, trying to keep home life, work life, and hospital life in a city that takes a 3 hour plane ride to get to ... I never thought it would need to be this long.

We are so blessed to have such good friends, great family and strangers that have helped us along our way. I mean it from the bottom of my heart, we absolutely couldn't have done it without every single one of you. The generosity of gift cards, the well wishes, the comments letting us know you are with us, airfare and prayers, have been such a blessing. You have truly lightened our load in a time when it was needed. Very soon we will be able to repay you with a very happy, healthy, four chamber-heart boy and parents that are humbled by the whole experience. Soon Tucker will be running, going to school and climbing up on his kitchen set like old times...and I will be sitting back watching with tears in my eyes....amazed yet again at how much this boy has blessed our lives.

I thank you.....

( picture of Tucker 1 day old)

Mask On and UPDATE

2009-08-21T23:02:00.000-05:00

We had a good day, Tucker got up and was in a good mood from having the mask off all night. His xray was a little wet, but the doctors weren't to worried about it. I did notice that every time he drank or ate something by mouth, he would get really junky. So, around 2:30 or 3 in the afternoon, I returned from lunch and observed him sitting really still and a little pale. When I left he was asleep and oxygen saturation's in the 97 to 100 range. When I returned, his oxygen saturation's were hovering around 88 sometimes down to 83. I also noticed he was very agitated. Dr. Marx came by and he also commented on how agitated he looked.

After several doctors came by and did their routine stethoscope check, the decision was made to put him back on the mask for a little while. I must admit, this really busted my bubble. What I didn't realize was the plan was to put him back on anyway, just not this early. It was clear that he was just not ready to solo without the mask. Once the mask was back on, his saturation's returned to the high 90's and his color returned. The plan is to do the same as before, sprints off while he is awake and on while he is asleep. I was reassured several times by the staff that this was expected and we will still probably go to the floor early next week, so don't look at it as we are going backwards. It was hard for me as a parent to accept that, but like Karen and I have always said, we are on "Tucker Time"!!

After the mask was put back on, the decision was made to replace the NJ feeding tube so we can feed him without the worry of him aspirating liquid into his lungs causing them to get wet. As we know from the operations as a baby, until he gets stronger, sometime he swallows wrong and some of the liquid can go into his lungs. The plan is to have a swallow study done, of course it won't be until Monday, and Tucker can't have anything by mouth until after it is done.

Update:

After the mask was put back on, I felt as if my heart was broken. We were going so good and things were looking up, doctors talking about transferring us to the floor and now this!! I felt like the wind was knocked out of me. At about 8:30 pm, guess what, we took the mask off, put him into his stroller and strolled around the ICU again with just the oxygen in his nose. Saturation's were 100 percent!! That is just what I needed to put the wind back into my sails. That little boy just needed a little rest, he needed a little "Tucker Time"!! He amazes me each and every day. I used to wonder, when we found out he was Downs and had heart problems, what I did so bad for God to punish me with a child like Tucker, now I wonder what I have done for God to bless me with a child like him. If you have ever watched the movie "Radio", where Cuba Gooding JR., plays the handicapped kid that the football coach helps out, the coach has a great line, "If we treated each other half the time like Radio does all the time!!" That's the truth, what a wonderful world this would be. Tucker doesn't know a stranger, he shows love no matter who you are.

No Mask, and Tunes 08/21/09

2009-08-21T22:59:00.001-05:00

Tucker went the whole night without the bipap mask and did great. He was up a few times coughing, but that is to be expected. He has to clear all the junk in his lungs from wearing the mask and being on the ventilator. He can clear it o.k., but how do you tell a 3 year old to spit it out? So, his xray was a little wet, but the doctors were not to worried. They said to do lots of chest physical therapy and suctioning to get rid of all that junk. If he is still wet tonight, we may have to wear the mask again.

Beth is our nurse again today, so she really knows and likes Tucker. She has been really working hard to get that chest junk loose and out.

Physical Therapy came by and we worked on walking, sitting on the edge of the bed and kicking and standing up from a sitting position. He is still weak in the legs, but he did really well. I think they underestimate him because of the downs. When he does everything I ask him to, they were really impressed. Tucker is such an amazing boy, he will be back to his self before you know it. He will be running me all around the place with his oxygen saturation's at 100 percent instead of 75 to 80.

After Physical Therapy left, Brian came by and played music on his guitar and sang a few songs. Tucker loves music and was wanting to strum Brian's guitar. He let him strum a few chords while he was singing. Tucker just watched him and even started singing the "Itsy Bitsy Spider".

Update, 08/20/09

2009-08-20T22:58:00.000-05:00

Tucker had another great night of sleep, so that means I had a good night of sleep, as good as I can in the room anyway. All the bells and whistles keep me up until I just crash. His strength is coming back each day and he is becoming the little man I know. When he wakes up, he always wants to be held, so I picked him up and somehow, his feeding tube was pulled out. That's o.k. cause we were stopping the feeds anyway and he had already received his morning meds. After all that, we got dressed and went for a walk in the garden again this morning. We love our little outings.

The doctors just rounded and were talking about his going to the floor. They want to fine tune a few things before sending us. I totally agree. Why push when were not quite ready. I would rather stay here an extra day than try to push him when he is not ready. Since the xray and blood gases looked great, they said "NO MASK" tonight. Woohoo, all day and night without any mask!! The also agreed to leave the feeding tube out and let him eat, dring and be merry all on his own. He is taking the meds by mouth with no problem. Just before the doctors arrived, optimalogy came and looked at his little left eye. Said it was looking good, just a little dry and to keep up the drops.

Things are starting to come together. His strength, his appetite and his breathing are all getting better by the day. We are so excited about how he has been progressing.

The picture I have attached is of Tucker and Miss Beth, one of his favorite nurses, in the garden this morning.

A Wave Hello

2009-08-18T21:28:00.000-05:00

Tucker had a great night of sleep, (so did dad). He fell asleep around 7:30 p.m. last night and I thought he might wake up in the wee hours of the night, but he didn't. He would move around a bit to get comfortable, but he slept from 7:30 to about 4:30 this morning. Nine hours, wow!!! I was able to get a few more hours of sleep than usually. I have been sleeping in the room with him and all the alarms keep me awake, so good sound sleep hasn't happened in a while. Once we woke up, we got dressed and around 9 we went for a walk to the garden. Made a couple of laps around it and came back inside. It was starting to get hot and humid so we didn't want to risk anything. We came back up to our floor and made a few laps around the ICU and said our "Hi's" to everyone. He has really been full of energy this morning. Must be a sign we are getting better. We are now in the room and Tucker is getting settled in for a nap.

Just finished speaking with the Doctors. They are very happy with his progress. The plan is to keep him of of the bipap mask all day, including naps, and only put it on at night when he goes to sleep for the evening. We are also weening down on the amount of oxygen and on the adivan from 7 to 2.6 milligrams. Progress!!

The video shows him sitting in his bed watching his t.v.. Watch his left hand and he waves hi to everyone.

Closer to normal...

2009-08-17T05:58:00.004-05:00

Tucker is getting stronger all the time and is starting to get back to some of his normal routines. He is beginning to read his books again and play with his cars. He is also loving his music. I played some for him off of the computer and he began to dance while he was in his bed.

I "M" Tucker

2009-08-16T20:41:00.004-05:00

I've been super busy with numerous things the past week or so, and I've just found a moment to stop over and update.

In short, TUCKER IS DOING FANTASTIC!

Mommy and Sis have come home to KC for a few days to get things in order, after all, it's been 2 months since they've been home to check on things. Daddy is in Boston with Tucker and they are rocking out with tons of progress.

Tucker is no longer on ANY IV meds and is taking everything by ingestion through the NG.

He's up and out of his bed, taking strolls in the gardens and bouncing balls in the room.

Today, he took his first steps since June 25th. YAY! He's growing stronger by the day and oh so pink!

He's even pulling himself up in bed, up went the rails. lol! Our little Superman is doing great and his parents have done fantastic about encouraging him and giving him the opportunity to show those docs what he can do.

Tucker is only on oxygen through the day and the CPAP mask at night if needed. He seems to be weaning from the mask so very quickly and fabulously! There are two meds left that his body still needs to detox from. With the amount of time he's been on these meds, it will likely take Tucker several months to be off of those. But, we all know Tucker and how awesome he is. He may very well detox himself much earlier than expected.

So yeah, everything is going so well. Mommy misses her boys but she will be back in Boston in a few days. Daddy is taking very good care of the little man and has even began posting the updates to their family blog. We have another Daddy Blogger on our hands. lol! Be sure to stop over and check him out!

Daddy's Little Man

2009-08-12T09:07:00.002-05:00

Mommy and Sissy have come for a few days to re-settle things at home and prepare for school. Daddy and Tucker are sharing the joys of the weaning the mask together.

Tucker is doing really good, and seen in the photos, showing his smile once again.

"Tucker and I had our first all guy day and night. We did good. When he was off of the mask, he played and had a good time throwing the balls and dancing to his favorite music. We plan on spending some quality guy time today too!! We are going goo...d so far. He has been up and off of the mask since 6 a.m.. Go Tucker!!"

Those of you who have asked what the tape is on his face, it's in place for the mask. I think it helps to keep his skin from getting irritated while the mask is on.

The boy LOVES music! As you all seen before in video, Tucker also loves to dance!

"Had an excellent day yesterday and a very good night. Tucker has been off of the mask with an oxygen tube to his nose and does great. We were off for two hours at a time yesterday for about 3 times throughout the day. Today we plan on being off fo...r 4 hours at each time. Talking about tomorrow being off all day then back on for the night. They even said the "F" word for the first time. "FLOOR!" (non ICU room)."

Today's goal is to get Tucker off the mask in four hour sprints. I am sure he will do just fine, Daddy is by his side and cheering him on, just as all of you have been doing from the very start.

Day 8 Off The Vent

2009-08-11T08:28:00.006-05:00

Good Morning Tucker fans! Tucker is doing well these last few days. He's been working to be off the CPAP mask each day and has been improving. They are now working to get him off the mask for one hour at least three times a day.

Little pieces of Tucker are slowly coming back. His smiles, his words, and his signs. He's sitting up more and trying to pull himself out of bed. lol! Strong little man!

Mommy and Sister had to make a trip back home for a couple of days to get some things in order for the school year. Daddy is with Tucker in Boston and taking very good care of him. It's hard to believe that Tucker and his family have been living in the hospital almost 2 months. Hopefully, they will be home soon.

Tucker was able to have his teeth cleaned and his hair washed on Sunday. I think he was very happy! There were smiles all around.

They were also able to get some video of the little man! He's so cute and I am so glad to report he's doing well.

And finally, I want to leave you with an excerpt from Karen.

"I have been in this hospital long enough to make a lifetime of friends and tonight I say good bye to one. I am heading home and when I return she will be gone...home to a different life than she had expected, home as a different person. Heart moms (dads too) live a life of uncertainty and more often than we want, a life of heartache. Tonight I got to see an angel...laying perfect in his bed, breathing over a ventilator that he will never come off. His mother standing proudly beside him knowing what a fight he has fought, knowing that he will not win. I cannot even imagine the emptiness. I, as many of you heart moms probably, have planned a funeral for my son several times in my head, with the what ifs, could I continue, who would be there, how would we do it......but I couldn't until today FEEL a little bit of what it would do to me. I love this family....they have been through a lot of what we have....and I am so very sad."

Please keep this family in your thoughts and prayers. And keep those good vibes coming for Tucker. He's come so far and I can't wait to see him home, running in the yard and enjoying himself.

Day 4 Off the Vent, 44 Days Post Surgery

2009-08-07T08:41:00.004-05:00

Tucker did really well on Thursday and Mommy was able to hold him a couple of times.

"I got to hold him twice today. We did it while he was pretty sleepy and not awake and agitated. We swaddled him up and he laid in my arms for about an hour the first time. Then he got a little restless and I put him back in his bed. The second time he had a huge blow out diaper, front-back-sides---everywhere so he wasn't there long. (he needed to poop so I am not complaining at all) It was a step towards where we want to be. Awkward with the mask, tubes, iv's and swaddled...but very NICE!!"

The main thing going on, trying to get Tucker weaned from the pain meds without putting him into terrible withdrawal. There's a fine line with any meds, but after almost 2 months of being sedated and on large doses of pain meds, anyone would have a hard time coming off them. The struggled the first night to keep him comfortable. I think by mid day yesterday, they found a dosage that worked.

"After the terrible night of NO rest....today he rests. I think, knock on wood, that we have finally found the mix of medicine to keep Tucker comfortable. At rounds they looked at all the amounts given throughout the night to capture Tucker and they came up with a plan. It has worked so far today, almost too good. (meaning maybe too much once again, we will have to wean back but slowly..) Today they will let him rest, since we were up all night..but tomorrow we wake up, move around, and wean the settings on the mask. We had another 10-15 minute time frame off today. His oxygen levels stayed pretty good, needed blow by oxygen is all...which is a good sign. We might even get longer periods of time off the mask tomorrow. We will see."

Mommy is staying busy by filling the scrapbooks about this Journey of Tucker's. If you have anything you'd like to add to the book, please send it to crackerjacks51603@yahoo.com. Letters, photos, pictures, cards, anything at all that will help document Tucker's Journey For a Whole Heart.

Today, FRIDAY, is day four off the vent. I hope Tucker continues to do well and progresses more and more each day.

To catch small updates throughout the days, follow me on Twitter.

Tucker, Off Vent, Day 2 VIDEO

2009-08-05T22:43:00.001-05:00

So, Tucker has some "mask off" time to produce a cough for the respiratory therapist. The tape on his face is to protect it with the mask on....but he is interacting and understands what we ask. Still some withdrawal today but most of the time, while awake, doing great with the breathing and taking in big breathes.

TUCKER.IS.OFF.THE.VENT

2009-08-04T15:02:00.003-05:00

Stand up and cheer! Thank you to each and every one of you for your thoughts and prayers!

Tucker is now off the vent and on a CPAP mask, Continuous Positive Air Pressure. The CPAP mask will help to wean Tucker off of the prescribed "room air" gases that he was receiving during intubation. Weaning him this way will make it much easier on Tucker.

Overnight Complications

2009-08-04T09:26:00.005-05:00

During the wee hours of the morning, Tucker had a few complications. I'll give you a simple run down and then update Twitter as needed.

130am (EST) a new medication was added to Tucker's regimen to begin the Detox of his body.

This new med was suppose to work instantly, instead Tucker laughed it off.

They tried (at least half a dozen times) to get an arterial line in to help monitor his blood pressure very closely, but they haven't been able to find a line. The new meds can cause really low BP so they must watch it carefully and have another med handy to bring his BP back up if it should fall.

Okay, so that brings us to about 330am (EST) this morning.

Tucker began having a negative reaction the detox meds. Started hallucinating and such. Heart rate changed dramatically and he didn't know who Mommy was. This was suppose to be a nice and gentle drug to bring Tucker down.

They stopped the meds. They are going to have to try to find something else. He was awake at this time and doing better with the meds off. Still 12 pokes in and no arterial line either.

They gave him some Cloralhidrate to help get an i.v so they can do the new drugs we are putting on board.

LONG night/morning for all. I haven't heard from her this morning. (945am CST) I hope they got things better and soon.

Please keep him in your thoughts and prayers today. Updates will be going out via Twitter for a good portion of the day. Follow Me On Twitter.

Tuesday's A BIG Day

2009-08-03T21:44:00.006-05:00

Wow, so we are going on 7 weeks of Tucker being in the hospital in Boston. Can you believe it?

Well, 7 weeks later and the Doc's think tmrw is the day.

The day to put Tucker in Detox (from sedation and pain meds) and pull that vent right out.

He's ready. He wants to be awake and play with his cars and watch cartoons.

It seems Tucker is tempting a fever, so cultures were taken and they are awaiting the results. However, the intention is still to get him "unhooked" from the vent on Tuesday. Let's keep our fingers (and toes) crossed that all goes well and the cultures com back negativo!

We need fabulous vibes through the night that he sleeps well and saves energy for tmrw. You know he's got a fight (or five) to pick with all of those nurses sticking him. lol!!

When Tucker does come off the vent, he needs to be able to tolerate it and expand his lungs enough to keep fluid from gathering in his lungs and around his heart.

Tucker will also need to be weaned enough from the sedation that he can put all of his energy that's been sitting in reserve to take deep, full breathes.

And finally, with all of the i's dotted ant the t's crossed, we pray that Tucker's heart will welcome the new flow and not overwork itself.

Take a good luck at this sweet little man...tmrw, I hope those tubies are gone, forever.

Send your kisses, hugs, love, prayers and peaceful thoughts to Tucker and his family.

-Alisha

Friday's News!

2009-07-31T21:58:00.002-05:00

It seems Tucker had another fabulous day in the CICU! Next week is going to be a big week for Tucker and I can't wait!

**********

OK. So I am sorry I have not updated myself lately. Again, when not much changes it gets old saying the same things. Today, yet another new ATTENDING, another new plan. I called our cardiologist, he came, told them what the plan is and it is to get him off this vent and take it out early next week! No more waiting, no more slow it goes. He is ready. He has done great progress this week. Oxygen is great, blood pressure is good.....so forward. I was planning on going home on Sunday for a while with Hunter, now I will wait until the following Friday to decide. IF we can get the vent out we could possibly be on the floor in a week......the floor is the final room before going home. They have said that since Tucker has taken a while here in the ICU that the floor will be very quick. We just need to get the eating by mouth thing going before we head home. ALL VERY GOOD NEWS!!!!

So, hopefully this weekend we will continue to make progress on the vent, then we will be free of it next week early. We went down on two different medicines today, which has given Tuck a little more "crazy" awake time. It is a fine line we walk with the sedation, breathing over the vent...and so on. I dont think they will ever find the right mix and neither does Dr M, so I think it will be wake him up and pull it all in the same day next week. We have to try...we have to get him off it before we hit another infection or something.

We got to take the bandages off his chest, it is amazing how much they have healed already. The bruises are slowing going away from the pokes for IV's. His rash is gone. His eye continues to be really red....still doing the regime for healing. He still only has the pic line for access to his veins. We had some thrush in his mouth but have fixed that as well. We have been able to wear pants and socks, so a little bit of normal. We have had several days of poop and pee....our fluid balance is negative once again....

I think that is us in a nut shell. We have recieved lots of pictures for Tuckers walls....and will post pictures of them tomorrow. Thank you EVERYONE who has taken the time to send us mail. It is nice to hear from everyone and feel the love from each and every one of you. Tucker is stealing the hearts of the nurses here as well, now that he can interact a little with his eyes and movements. He shakes his head no when he doesnt want something....which is everything right now. Just wait til they see him without tubes and iv's.....we have shown everyone we can the video of him dancing...so they can see how much he moves, dances, that he walks, that he has a life outside of the bed he lays in here. Who could resist not loving this little guy!!!!!

♥ Mommy

Take It Down A Notch

2009-07-29T20:13:00.004-05:00

So, Tucker finally got to put on some shorts today! Yay! Poor little guy has been sporting a diaper and iv's for a month, so a nice pair of plaid green shorts should have hit the spot. Not to mention some fabulous, LUCKY socks to match.

Nice shorts and lucky socks!

In addition to all of that fashion goodness, Tucker really did seem to have a good day. One of the major points of progress today was the vent. Tucker was sitting at about a 15/16. This evening, he's down to level 11! Yeah, totally awesome! When he reaches a level 8, things should start to wean quickly. I am hoping that by tmrw evening, Tucker will be down to around an 8. Think Eight my friends!

Second great thing about today, medications (including sedation drugs) are being weaned little by little. This is a fantastic point of progress too! If you saw my tweets earlier, you heard that Tucker was actually awake enough to watch Nick Jr all morning. Cartoons, a kids best friend!

Third fabulous piece of news today, Tucker's Ophthalmologist came in and said his eyes were looking better (re: the ulcers) and to keep the regimen of drops and ointment going.

Fourth, Tucker's heart doc, Dr. Del Nido, said Tucker's chest x-rays are looking the best they have in days. Everything is moving in a forward, progressive motion.

See, there you have a whole list of wonderful things that your prayers and thoughts are doing for Tucker. People from all over the world are sending in their love for this precious boy, and it's working to make him heal faster. Thank you!

I hope tmrw is just as productive as today. *hugs*

We ♥ Tucker

2009-07-28T20:22:00.002-05:00

The love for Tucker continues to come from around the world.

Do you have a photo/banner/picture that you would like to share with Tucker and his family?

Send it to crackerjacks51603@yahoo.com and I will make sure they receive it and it's posted in the I "Heart" Tucker photo gallery over in FLICKR.

Show Tucker some L♥VE. :)

33 Days Post Surgery

2009-07-28T09:24:00.005-05:00

Tucker is still holding pretty much the same pattern as he has over the last couple of days. We are still hoping for progress off the vent.

While there hasn't been much to update, I do know that yesterday they started a new heart medication. The new med is suppose to help the heart relax but it also messes with Tucker's Blood Pressure. Tucker needs high BP right now to keep the fluid off of his heart and lungs. It also helps Tucker to pee out all of the extra fluid. If I understood correctly, there are still some wet x-rays and the vent settings were not moving down much.

It's hard to see Tucker right now. Mommy says that the past 33 days have taken a toll on Tuck's body. IV spots are black and blue with bruising, especially his groin where they have entered during two heart caths. Of course the chest his trying to heal as well. Tucker also has some kind of rash that may be a result of the antibiotic that they put him on when cultures came back with indication of an infection a few days ago. And lastly, his eyes are still in the process of healing.

As mentioned in earlier updates, Tucker has some small ulcers on his eyes. I believe this is a result of his eyes not being completely closed during this hospital stay while he's been mostly under and sedated. I know eye drops are being administered in hopes of clearing them up.

This is all I have for the moment. I can't thank you all enough for continuing to check in on Tucker and his family. I know the updates aren't as fun (and constant) but Tucker is stable and just needs time to come off of the vent. This is the most important step towards progress. Notches on the vent are coming down, but it doesn't take much for them to come back up with the slightest complication.

Tucker is a strong boy and will be up and out of that bed in no time. Mommy and Daddy are anxious to hold their son and his sister is more than ready to hand out piggy back rides again. All in good time; Tucker Time.

Today, I am leaving you with some photos that I took of Tucker just days before he left for Boston. Enjoy!

Tucker and his Sissy

Mommy and Tucker

Please keep sending your love, thoughts, prayers and good vibes! Thank you!

Saturday and Sunday Updates

2009-07-26T21:38:00.004-05:00

Sunday, Mommy and Daddy Keep Their Eyes On The Prize:
THIS is why we are here.....our Prize!!!! I went through a bunch of old photos and videos of Tucker, boy I cant wait to hold him and watch him dance again.....but we will see these things again and THAT is what I need to focus on and remember. He is the joy in our lives and everyone he touches..... he puts a smile on my face and lightens my heart.

(Video is Circa June 18th, 2009-3 days before he went to Boston)

Saturday, Nurses went A-Fishing:
Today didn't start off good for me, or Tucker today. I woke up around 5 to someone trying (yet again) to get an iv in Tuck.....another fishing expedition. When I say fishing expedition, I mean it. The needle is in the arm and they are pulling it out to stick it back in, moving it from side to side, pulling it out and pushing it more to the left or right,,,,FISHING!!!! I got up, asked why....he had a fever and they needed to get blood cultures. "He had coils in the cath lab done just a few hours ago and fevers are going to happen after that. " Please stop, use one of the 3 ports that have access already.!!!!!! I lay down, fall back to sleep to wake up to someone else "looking" for a spot to try again for an iv...... OK, enough!!! I found the doctors and had a word. I know the nurse was doing as she was told --by the dumb ass that told her to do it---but the --dumb ass-- that told her too should have known, or put two and two together, as I DID, that fevers occur after coiling. Shouldn't they have known that, or thought of that instead of jumping right to infection. Not to mention we are already on antibiotics.....HELLO!!

So I talk to the doctors and tell them to STOP!!!! Tucker had a rough day yesterday. He came back from cath with ivs in 3 of his 4 limbs, then they paralyze him again to poke and scrape his eyes, dilate them....and now you are trying to poke him again! He is done, I am done... this all before 8am.

So, then another NEW nurse that has never had Tucker. YUP, can you believe it. So, I am not even sure what time it was, not long after and Dr Del Nido comes in to say the chest x-ray looks better today that he thought the coils they did do would make a difference. Tucker is awake and starting to become MORE awake. He grabs the vent tube and starts pulling it out....luckily Del nido was close and grabbed it. Long story short....Tucker's dex drip (sedation drug) was not hooked up and was leaking on to the bed...I found it there. Tucker was awake and PISSED off! The nurse is trying to hold him down, a NO NO....so we had to try to recapture him once again. Got him plugged back in the drip, gave him 7 mils of versed and some choral hydrate and after 50 minutes he finally hit the wall and was out until 7pm tonight.

This was our day.....and I am not even going to talk about the respiratory therapist that did the suctioning today. UGH...I will say, she asked me to help her hold things as she did her job..she needed extra hands she said! ( can you just say, I was going to kill someone)

I hope, for Todd's sanity, that I have a different nurse tomorrow. He hates it when I am not comfortable with what is going on.....but today, even he was not sure of the care that was being given. Our boy is too precious and too sensitive to change for someone to come in and make careless mistakes.

♥ Mommy

Results of the Heart Cath

2009-07-25T12:47:00.003-05:00

Saturday the 25th of July. Today marks ONE MONTH since Tucker had his surgery. One month since Tucker has opened his eyes and seen his family.

Please continue to keep Tucker and his family in your thoughts and prayers. After yesterday's Heart Cath, it seems things are going rather well, it's just a matter of time now. Tucker Time. Send him strength to recover completely and quickly. -Alisha

OK, sorry it took us so long. We didn't get to come back to see Tuck until after 9pm. This is the jest of things. They took down 3 vessels by coiling them. They really thought there were going to be more than that but weren't. They got to measure the pressure in Tuckers left atrium, which is still high. The wetness of the lungs is the back up from the left side of the heart, which they knew was happening but now they know the extent of it. The pressures are coming down, they were in the 30's now they are in the 20's. These results just mean that the left side of the heart is still very stiff and TIME....time is what it will take. Again, we don't know how much of that will involve this hospital stay and what will not. We were very happy to learn that it wasn't something more wrong in the heart requiring some other action, like an additional surgery or valve problem. Just time.

We can move forward to extibation at whatever rate Tucker is ready. I am not sure what that means exactly. I have a big list for rounds tonight with questions. Todd and I need to make a decision on how we are going to handle this stay for a longer period. I believe it will involve a switch off, one at home and one here, then switch again. Hunter will be starting school, the house needs up keep, we have jobs that need to be tended too as well. All things that cannot be on hold for months and months, if that is what it is going to take. (I don't know that is what it will take, if it is we will deal with it and do it the very best way we can...but we need a plan now, different than our original one)

Ophthalmology showed up today (finally). They dilated Tuckers eyes and did some "scrapings". (yeah OUCH!!) They sent them for cultures. So far they are saying he has ulcers on his eyes from not closing all the way for so long. The nurses are to use drops every hour on them-it is a refrigerated antibiotic drop. Ophthalmology will be by every day until the eyes are back to normal. I didn't get to talk to them. They did this right as he came back from cath lab and paralyzed him so they could do all the eye cultures without him moving around on them. (this was part of the reason it took so long for us to be able to see him when he got done with cath...that and the DIGGING exploration for new iv ports---yeah even the head was tried)

Tonight we are mentally exhausted. We were so hopeful that there would be lots of vessels to close off and that it would be a miracle fix, off the vent and home all in the same few weeks. Maybe that will still happen, maybe it wont.

Time......Tucker time!!!! We know this yet try to do things on our time only to relearn this lesson again and again. Everything Tucker has done thus far in life is on his terms, his time.....and this too will be done on his terms...his time.

♥ Mommy

On The Schedule

2009-07-23T22:48:00.002-05:00

It sounds as though tmrw will be another day full of news. Please keep Tucker in your prayers as he undergoes another Heart Cath tmrw. Thank you! -Alisha

******

Don't know what time exactly but the heart cath will happen tomorrow. They were so busy today they couldn't fit Tuck in. Dr Del nido stopped by to explain what it is they are looking for. He has looked at the heart cath from pre-admission and thinks there are several other vessels that could have been coiled then that were not. This could be the reason that Tucker cannot seem to get his lungs dry again. This will also be an opportunity for them to measure pressures in the lungs and the heart to ensure there are no other issues that could be or are causing issues. They want to do this before we extibate so that we have all the facts about Tuckers condition....all rocks overturned, all T's crossed. They dont want to extibate then find that we cannot stay off, or have a hard time and have to be re-intibated again.

The body is an amazing thing. These vessels I am talking about....these are blood vessels that have formed , due to the heart defect, that help the heart get blood where it needed to go. With the defect Tucker had it was fine, however with the fixed heart it causes extra blood to the lungs, causing them to be wet. These can be "coiled" off so that the blood is not taken away from where it needs to be. As Tucker's heart becomes more and more relaxed these vessels, as I understand, will stop growing because it will be getting adequate blood flow to all the correct places. (there are all kinds of medical terms that I am missing in that explanation but I dont remember any of them) If you have been following us for a while, I think I mentioned that they had coiled 14 or something like that of these vessels presurgery.

The cath will take about 4 hours and we should have results pretty quickly on what was done during the procedure and what needs to be done,if anything, to move Tuck forward!

♥ Mommy

Thursday Morning Updates

2009-07-23T09:33:00.002-05:00

Tucker is getting a blood transfusion this morning. Not sure why he dropped so much overnight, it was 35 and this morning 29. (the humanicrit) So this morning we are getting blood. The didn't take a lot of blood gases yesterday so I don't think that could do it. The nurse said maybe he is lacking iron...and we needed to check the white blood cell count.

Then, Dr Marx talked to Dr Del Nido this morning and they have ordered a heart cath. This is a procedure that is done through the groin, the same procedure we had done before we had our surgery. They are concerned that we might have some more vessels that need to be coiled off. This will also give them lung pressures, heart condition and lots of information that is needed to know where to go next. They are very confident that the coils are what are needed but won't know until they get in there. Don't know if that will be today or not but sometime very soon.

Tuckers belly is extended once again. He pooped yesterday but have put the regime back on to get everything out once again. The pee has slowed as well, we were positive again yesterday. X-ray looks wet again this morning. We still don't know what the infection is that is culturing from the lungs.

Wednesday Updates!

2009-07-22T18:20:00.003-05:00

(Photo From The Past)

I lose track...Tues or Wednesday....anyway. Today is another day of fighting fevers and hanging out. We did get the arterial line out of Tuckers left hand today. It quite working overnight and had been in since surgery day, so it was taken out. The pacing wires to Tuckers heart were also removed today, also in from surgery. Anything that could come out today did to ensure infection is kept to a minimum.

We have moved to yet another pair of lucky socks today, hoping we will find the pair that has the most power in them...today Camouflage. They talked, again TALKED is the key word here, of extibating Tucker as soon as we can get the infection and fevers under control. The longer the tube is in the more apt we are to more infection. We will take the tube out and go to a Cpap mask for extra support. This could happen as soon as 2-3 days from now, again I cannot remember what day it is so ..Friday maybe. I am sure they wont do something like that over the weekend so it might even be Monday...again, Tucker time.

We have ophthalmology coming to look at his left eye. It is really red, from being half open during paralyzation. They gave us drops to put in them but they are not helping. He has a bed sore in the back of his head now, one on his back and one on his ear. The only iv line we have is the new pic line they put in yesterday , mmmm maybe it was the day before. Anyway, he is at bare minimums on access and things attached to him, which is good for his body and healing. He squeezes our hands, and calms down when we give gentle touches. I am sure he cant wait to get out of bed. I am scared, a little, that some of our progress on walking and such may take a step backwards with all the bed time. I know he will be weak, for sure (who wouldn't), but I hope and pray we don't have to start over on holding our head up, and sitting and such. (I am sure that wont happen but it crosses my mind for sure....a month of NO getting up, NO eating, NO stimulation, on a low muscle tone kiddo....a lot crosses my mind)

That is us in a nutshell. I hope to have a post, very soon, on life without a breathing tube.....

♥Mommy

Twenty Seven Days

2009-07-21T19:08:00.005-05:00

It seems as though I run about 2-3 days behind updating this blog. Not to worry, there are many places to find updates on Tucker if they are not here.

Follow me on Twitter and you'll never miss a beat. I update throughout the day.

You can also check in on Mommy's view from The Bryant Family News.

And I get around to updates on Izzy 'N Emmy too.

Thanks again for keeping up with Tucker. He and his family are on day 27.

Yep, 27 days.

27 days of living in a hospital room.
27 days of showering in a hospital shower.
27 days away from home, in a state they'd never been to before.
27 days of eating fast food, hospital food and vending machine food.
27 days of sleeping on a bed next to Tucker, who by the way has been in his hospital crib for, yep, 27 days.

Just stop a moment and imagine what you have been up to in the last 27 days. Amazing how it seems as though these last few weeks have gone so fast from our end, but I am quite certain The Bryant Family is ready to come home.

(Weekend Spongebob Marathon)

Karen has been updating at will, but as she has mentioned, there isn't a lot of updating to be done. Only small changes and tweeks are made each day and living through the ups and downs once is enough that she shouldn't have to write it out again for us.

So here is the jist of things as of today, Tuesday, July 21st. Tucker has a lung infection of some type. Antibiotics were put on tap today and hopefully they will work some magic and Tucker will be all better soon. They are not sure what has caused the infection, but it could be from the vent tube being in place for so long.

Besides that, the main focus is weaning Tucker off of the vent. This is the first step in moving forward. Having a lung infection and all kinda sets him back, but again, the meds should help him clear that up fast. He also received a pick line today and hopefully his central line will come out soon. The longer it's in, the more prone to infection Tucker is.

Tucker is also still sedated and on EPI again. EPI is a drug that increases the blood pressure to make the heart beat a little faster. This keeps the fluid from accumilating too.

Hunter is back up in Boston now and I am sure they are all glad to be together again. Tucker and Hunter are close and I just know that when Tucker heard his sissy's voice, he felt much better. This will also give Karen and Todd a distraction from the everyday mundane.

So, that's the basics. For more info from Karen, hop over to her family blog and you'll find some more goodies.

In the meantime, please keep sending those prayers and good vibes. At last check, the doctors told the family that Tucker is still several weeks away from home. Work your magic and send Tucker and his family all the strength you can muster.

The following are specific blog entries.

Saturday: Quiet Night and We Have Poop!

Monday: Monday Again

Tuesday: Thank You and I Know, I Know

Praying For Poop and Holding Time

2009-07-17T22:58:00.002-05:00

Aww, after 23 days since surgery, Mommy was finally able to hold Tucker. How awesome is that! Even with the sedation and pain meds, I bet Tucker knew right where he was; comfy in his Mommy's arms.

***********************************

Friday, July 17, 2009

Holding time....

YUP... I got to hold Tuck for about 30 minutes tonight.. A good nurse that knows the need for holding and loving! She just felt Tucker acted as if his skin was crawling, asked if he had been able to get up out of bed at all since we got here..NOPE...so she did all the arrangements of the i.v's and the vent and I got some Holding TIME!!!! I dont know if Tuck knew he was in my arms or not but it was nice to be holding him, giving him kisses and talking quietly to him. A much needed fix for me.

Today,,,,no poop! We are still holding any other advances until we can get his tummy back to normal size. So, still we pray for poop.

We also had an extensive echo done on Tuckers heart. The mitro valve was in question as it is on the smaller side. However after one hour or more of 3-d imaging we have a very good report. The left side is still hard but is functioning the way it should, everything is doing what it is supposed to be actually. Very good news. The stiff left ventricle will relax over time, not necessarily time in the hospital, but months of time. It will all depend on if Tucker can sustain his body off the supports he has now while it continues to relax or if we will need more time to help it relax with the supports....it is all about Tucker time. It could be 3 weeks, just long enough to get the vent off and things tweaked before we head home, or it could take 2 months until it is relaxed enough for Tucker to sustain his function.....but the great thing is, is the surgery worked and the heart is functioning great!!

Praying for POOP!!!

I know, I know...nothing is sacred. Tucker is very bloated, tummy distended some. We pulled a lot of gass off him last night even after our initial poop yesterday. They took an x-ray of the belly today to see what kind of shape we were in. He has stool blockage that they will work on getting out today with several different tactics. Nothing else is being done today....just Praying for POOP!!!!

Updates, July 13th-16th

2009-07-16T23:12:00.004-05:00

I apologize for being a bit behind on the updates. My own little world has been in a spin. Please do remember that any small updates or major events will be tweeted. You can follow me on Twitter or check Tucker's Mommy's blog.

Hugs and thanks to you all for being so wonderful during this journey. Karen and Todd are very grateful to have so many people thinking and praying for their fantastic son Tucker. So here are the latest bits of info from the last couple of days.

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C H E E E E E S E

Is that not the cheesest smile ever!!! Thank you Ms Whitney for sending us this picture. LOVE IT!!!!

If you touch on the picture to zoom in, notice the purple tint to Tuckers lips and truly all of his body; finger tips, around his eyes....today it is no longer there. PINK replaces it...a WHOLE HEART BABY!!!!

Our house....

So, I thought I would share a picture of our "home" in Boston. Just a few of the room, where we hang out . I added some "decor" today. Construction paper hearts all over the room, a WE love TUCKER banner from mom, and tomorrow a mobile to hang over Tuck's bed of hearts with our faces on them.

Today was a day of small advances, one being he did the ventilator on pressure support only, which is when the ventilator only gives him help as he breathes himself. Back pressure to help fill the lungs to the appropriate place before expelling. He did this all day on his own, over all sedation. They took him off to rest for the night but will put him back on it tomorrow. We just had a POOPY diaper......yeah yeah yeah...and lots of gas after that. He was agitated all day, couldnt get comfy and I thought it had something to do with his belly....he was throwing his feet down on the bed, over and over again, not like him. So they gave him a fleet enema this morning and it is finally kicking in and he has been much nicer tonight on his awake times. I even got to turn on the music and roll him on his side, both he has not been able to tolerate til now. The sedation doses went up again today and more than likely will continue to go up until we can take the drip sedation drugs away. Unsure how long that will be or take.

Hunter is coming back out Sunday. I , we, miss her so much. It will be nice to have her as a distraction and I am sure Bubba will be glad to here her voice and see her when he wakes up. They are the bestest of buddies.

OH and Tucker officially "down under" today.....we have Australia praying for Tucker!! It is so amazing how many lives Tucker has touched.... and continues to touch each day.

Wednesday, July 15, 2009

new artwork for our LOVE wall....

Thank you Ms Allie....

I do have to apologize....

that I have had an attitude all this week. Just feeling blue. Tucker has had a few episodes of awake time, he has held his blood pressure, sats and everything he is supposed to do to show progress in the relaxation of his left ventricle.....good right! Great!!! Awesome! However, the doctors are less enthusiasitc and continue to put more sedation on board. When he has more sedation, he does not breath over the ventilator...which is NO progress forward to the ultimate goal. This happened several times over the last 2 days, since paralytic was lifted. Each time, they continue to put more and more drugs on board, putting him in a spot that he doesnt breath over the vent. WHY???? Because they want to have control over the situation, control over the vent, control over when and how Tucker will come off the vent. SO, until they find a sedation that will keep him happy but breathing this is the game we will play....to be honest, I dont think they will ever find it. So, will they keep this game up for weeks? for months? until they figure it out or will the fighting the sedation while Tucker is trying to fight the tube put Tucker back at risk for some kind of failure and we will take steps back after doing this dance for weeks....? Good questions right? I think so....so I have asked over and over again the past two days. This is my frustration.....We feel that Tucker is trying to tell them, he is fiesty, he wakes up, holds out his arms to be held, he holds your finger, he looks into your eyes, he kicks his feet,,,,a cry for normal, a cry for help.....then they kill his spirit and download all the drugs until he hits a brick wall. Then it wears off and we start all over again. A terrible feeling of helplessness.

So yesterday I couldnt stand it anymore and stayed away. And frankly today might be the same way. I am just so upset, our day scheduled home has passed by and there is no "time frame" in this at all....it is a day to day basis and I HATE that!!

Tuesday, July 14, 2009

Precious fingers and toes

Today was a bad day for me. I mostly stayed away from the hospital...slept a lot and just stayed away from the room. There were a few events that led up to my "bad mood". But I am not going to bitch about my hospital settings, freaking dumb doctors, and their plan for my son...the ever so nonchanging plan. SOOO, instead I am going to send out some pictures. Enjoy

Monday, July 13, 2009

Exploring the city...

There have been a few times when we steal away a few hours and explore. Todd went to the bay and aquarium, we walked to Fenway Park, went to an area mall....little things to get out. I love the architecture here, the way the brick buildings are tall and thin and lined together in a row. One a little different than the next.

Paralytic off once again

This is my view from where I sit in the "bed space". We watched today as Tucker slowly but surely woke up. Toes wiggling, arms moving....slowly he came to life. The medicine, sedation that is, is much better this go around --no bucking bronco...just a wiggle worm. He is breathing over the vent but minimally, he will have to improve much more to come off. The balance of timing vs. sedation is the key. Tonight I think we just lay low, make sure our awake times stay as good as they have today...then see what tomorrow brings. Maybe a different sedation, a tweak to back off, who knows.

Life at a hospital....

I know a lot of our followers have had first hand experience at living out of a suitcase, where constant bells ring, pagers go off, iv's are put in, sleep is little or none, while their loved one is hooked up to machines. It is not a fun experience...actually I wouldnt wish it on my worst enemy. We have been here 3 weeks, that is 21 days...of hospital food (which is too expensive and tastes bad, atleast in KC the hospital food was OK), of showers that make your skin crawl (just because all parents use the same shower), of days without our families that are back home, 21 days of misery.

Hospitals, dont get me wrong, are a great place. We need them. If we didnt have them where would we be? The reverse is unthinkable. But it doesnt change the fact that life in a hospital, in a city where you know no one, where you live and breathe it.....changes you.

There are 27 ICU beds on my floor. 27 families effected with hospital living. Some have been here for months, some just coming in....you can see the same look on everyones face, a face of "what today? a good day or bad?" Curtains close, procedures (big ones) are done at bed side to save a life, codes blues are called and all you can do is Hold on and cry....praying for that family and yours.

I am feeling the weight of living from a suitcase, watching as Tucker goes forward then back then forward again but much slower. It is a hard , exhausting road....

Updates-Friday, Saturday and Sunday (07-10/11/12)

2009-07-12T20:56:00.001-05:00

Sunday, July 12, 2009

Lazy Sunday....

Tucker is resting today nicely. We have increased his sedation so they could possibly try to raise the paralysis tonight or tomorrow again. That is about all that has changed today. The usual new iv's, tweeking of the fluids...that kind of stuff is always going on but nothing other than that.

I started a new book by James Patterson. (thank you mom) The library isn't open on the weekends so I was unable to go and get the 4th Twilight book to read....maybe tomorrow I will go. (gotta read about the wedding being planned--heard #4 is the best of all of them so far) I know Sheena and Alisha will be very proud of me getting as far as I have on them.

I talked to my mom today, I talk to her every day but today I got to put in a request for a package with date-fill cookies and some donuts. She is at Gram Peters house, her mothers house, in up state NY...Gram makes the best donuts!!! (Hi Gram) So I will definitely be looking for that package soon...too bad she couldn't throw in some cheese curd as well (hint hint) Love you mom!!!!

SO, I don't want to jinx it but......quiet day. Todd went to see the tall ships that were in the harbour today so I will post pictures of them later.

Saturday, July 11, 2009

and so it goes....

The balance of fluid.....so very fragile. From overload to too dry in 2 seconds.

Today didn't stay quiet as we had hoped. Tucker decided to have another episode, this time we believe it to be attributed to him being TOO DRY......we had great pee over the past few days and it very quickly turned on us. The only good thing that came of it is that we were taken off the high frequency ventilator and put back on the other one. He is doing well after his blood transfusion and some pushed i.v. fluids. So, as we can all predict now, he will have a wet x-ray once again in the morning. Probably not as bad as the last episode because he was too dry to start but wet nonetheless.

We had him blessed again tonight. It was awesome to hear them say "there are so many prayers out there for him. The love that people have for Tucker, even strangers, Heavenly Father knows." I am a firm believer in the power of the Priesthood and healing of the sick. Tucker is a true testament of that healing power.

Please continue to keep Tucker in your prayers. Thank you everyone again, I cannot say thank you enough, for taking Tucker and our family into your hearts and homes.

We miss you......

OH how we miss our Tucker boy!!!! It has been two weeks since we saw a true sign of our little man. At times we cant help but cry and think we did the wrong thing here......emotions are edgy and high.

Another quiet day here, nothing being changed.

Friday, July 10, 2009

OK....I know you have been waiting.

Nothing new today. Tucker pee'd out over a liter yesterday after measures were taken to correct the fluid overload. They continue to pull fluid now as well. He has tolerated the new machine, which by the way sounds like the paint mixer at the local hardware store. He is down to only 40% oxygen added to the machine to keep his sats at 95-100%. (we were at 100% oxygen on the machine and only having sats at 85-88 before all the fluid was lifted off him) By the way, when I say SATS, that is oxygen saturation in his blood stream. He should, now with the repair, be 100% like you and me. Before he ran around 75-80 percent which caused slow healing and his purple coloring.

Todd and I got out for a while since everything was pretty much the same here at the hospital....it is amazing how tired we get we have noticed. After sitting most days and just getting up to move positions or go down to EAT-which seems to be our favorite pastime, our bodies are feeling the weight.

Tomorrow we are having a visitor, Michele and a friend. Other than that we plan on being at the hospital and chilling out. Maybe finish the 3rd book of the Twilight series....

Thursday, July 09, 2009

Thank you.....

I am exhausted and so is Todd. I think Alisha hit it on the head, everything that happened and is continueing to be watched and adjusted every minute, every hour to ensure Tucker recovers.

So...on that note. The request for pictures. Not exactly what you had in mind but I wanted to take a picture of our Wall of Love.....these are pictures from Tuckers friends at NEEC... (hey guys!!! we love you). We have received cards, a few care packages (thanks Kim for the razors) and an awesome picture of Tucker's entire school. (zoom in and you will see it) What love we have for everyone....thank you so much for your support , prayers and thoughtfulness.

Send me a picture, colored or other wise....I will decorate Tuckers room with them. Afterwards everything is going into a scrapbook of OUR WHOLE HEART JOURNEY.

William "Tucker" Bryant

c/o Boston Childrens Hospital

300 Longwood Ave

Boston, MA 02115

CICU, 8th Floor, Room 27

(this is Tucker on the new ventilator...sounds like a McDonalds fry machine when it rings off)

Tucker's Journey, 14 Days Post Surgery

2009-07-09T16:01:00.007-05:00

Hello Tucker fans, I've just spoken with Karen and am some lovely medical jargon for you. I'll try to be specific and put things in order.

All of this trouble that Tucker is experiencing started two days ago. Dr. Del Nido did an ECHO and said things were looking great and that taking Tucker off of the vent was going to be soon. Things were looking good! *Tucker's heart is doing great and in awesome condition after surgery.

Later that day/evening, too much fluid was being taken on and not enough of it was coming off. Tucker's lungs were filling up with this extra fluid, causing him to loose his sats and blood pressure go up. Everyone was kind of in a hustle to figure out what was going on and get it under control. They did not paralyze Tucker completely at this point, but did a little bit to help calm his body. Tucker was still not getting better after this point.

During this time, the doctors placed a new central line in his clavical, adjusted his meds, continued the paralytic and switched pain meds. Blood draws were showing too much of one pain med in his system, so that had to concot a new regimen.

Tucker's blood gases were still climbing and his O2 dropping. Tucker stopped peeing and still, less fluids were coming out. This is known as a postive balance. The nurses continued to try different things to rid Tucker's body of the fluids.

Okay, so now I believe, if my timeline is correct, Karen was able to give Tucker a nice bath and get him cozy. They gave Tucker his meds and he went right down. They thought this was a good thing, sleeping so well.

Then Karen woke up to nurses whipsering. Rushing over, she discvered that Tucker's blood pressure had dropped, his sats were 84 and dropping, BUN was high and his liver was distended and shutting down. His lungs looked terrible (very wet) and he was becoming hypertensive. The nurses told Karen that they had to put more paralytics on board and this time really keep Tucker out and unable to move. It took (3) doses to get Tucker to a point where he stopped trying to breathe over the ventilator.

That brings us to today. Mommy and Daddy had a team metting with the doctors this morning and they honestly believe Tucker is stable enough that he is progressing forward again. Tucker was put on a new ventaltor that does all of the work for him and actually agitates the lungs to help rid them of fluid. It shakes the fluid loose. There have been more diuretics added to his regimen too. Tucker has been getting rid of more fluids than are going in, which is fabulous news. This is known as a negative balance. Tucker was also given a steroid to increase his blood pressure a little bit, which will help his heart beat a little higher and get rid of the extra fluid. Chest x-rays from this afternoon look good.

As for some additional info, the new vent that Tucker is on is a step above the one he was on. He will need to be weaned from this vent, moved down to the one he was on, weaned off of that one and then he can be extubated. Doctors believe that this has set Tucker back about 5-7 days, give or take. That is a guess as to how long it will take Tucker to get back to where he was 3 days ago. Once he recovers from this little set back, he will continue to progress forward toward recovery and HOME.

Doctors believe Tucker will be in hospital for several more weeks. No one can say for sure, Tucker works on his own schedule. Tucker has proven to be much stronger than anyone (who doesn't know him) gives him credit for.

Things are facing forward now and each small step is progression. Mommy and Daddy are exhausted but seem to be doing better this evening. Questions have been answered and that's always helpful. Keep this little man in your thoughts and prayers. Every kind thought and prayers of strength bring Tucker and his family closer to home.

With all this text, I think we are due for some photos. I'll bribe his mother. :)

Thursday Morning Updates

2009-07-09T08:47:00.003-05:00

As of this morning, Thursday, I haven't had too many updates on Tucker. There is a meeting with the family and his team of doctors this morning that should shed some light of the course of action they are going to be taking.

If you have checked in earlier this week, then you know that Tucker was put back on paralytic meds and the ventilator assistance was increased. All of these steps backwards occurred, we think, because of extra fluid.

Last night was not a good night for Tucker and things actually got worse. X-Rays are still wet and looking worse as of early this morning. Tucker will not saturate and is holding at 86. Tucker has also stopped peeing.

The paralytic meds were brought on heavy this time and are not allowing Tucker to do anything on his own. His blood gases came back bad and his blood count is up to 14 from 10. A high blood count could indicate an infection somewhere, so cultures were taken and they are awaiting results.

Yesterday there was blood when doing suctioning and today they believe there is back up in the lungs. A lung scan is on board now, with hopes of finding more answers.

That is the bare minimum of what I know this morning. Karen and Todd are in a whirlwind of so many emotions. Not only are there so many things to worry about with Tucker, but back here at home they have a daughter who misses her family, a house that needs tending to and bills that need to be paid.

Please, please keep them in your prayers. Send them your love and strength, well wishes, good vibes and heartfelt thoughts.

Two Steps Back

2009-07-08T09:34:00.003-05:00

This update came late last night...

came back from dinner and had doctors in the room. Tucker lost his saturation's and couldn't come above 86 percent oxygen, we had to go up on our ventilator settings to get him to 94 percent oxygen, his blood pressure is 80's over something and we are getting blood when we suction him.......waiting for an explanation. They were trying to figure it out as well...why and what. Chest x-ray ordered.....I don't know what the HELL happened..... (-Karen)

And then this one came this morning...

Paralytic meds back on board. I don't know what to say.....i will blog later. Hard morning for Todd and I. Prayers please. (-Karen)

Please, Please keep Tucker and his family in your thoughts and prayers. They need strength.

For those of you who like to know the in's and out's of the medical standpoint, here are some specifics.

A big step into Tucker's recovery was removing the paralytic meds from his regimen. They were able to do this a few days ago. Even though he was off the paralytic meds, they kept him sedated quite a bit so that they could wean him off of the ventilator (breathing machine).

Weaning from the vent is quite the process. Because the vent does most of the work, and compensates for several gases found in our normal room air, it takes a little bit. However, Tucker was taking good breathes over the vent and everyone was hopeful that they would remove the vent soon.

Once the vent is removed, they can start taking off more of the sedation meds. If they were to let him wake too much, he would fight the tubes and try to pull out the breathing tube.

I have not be updated in details this morning, but as you can see, the vent settings were moved up again (more assistance) and the paralytic meds have been administered again.

I'll update as soon as I hear something, and hopefully that is soon.

Tucker's Making Progress

2009-07-06T23:05:00.001-05:00

Just some pictures to WOOO you with.....

Hello everyone...

Yet another quiet day with little bits of excitement in between. Tucker rests well once you get him down....and it is taking a lot to get him down. He fights the ventilator pretty hard when h

e is awake, tried to sit up almost. I still don't think he knows what he is doing, he still has wild eyes but I think he hears me and we definitely get a reaction. He loves cloralhydrate....it puts him out so darn quick but it contains alcohol and they don't want to use it much....it goes down the feeding tube in his nose. It is truly amazing how fast it puts him out. It is a sleeping medication, like on the level of NyQuil and since he has

never had it before...WOW. You would think it would have no effect since he is on the hard stuff ....but it does the trick. We have changed dressings, we can talk in normal voices, I can touch him....do whatever you want..he is out...and will be for a good 10 hours. On a very small dose.

We have had two small stools....which is another great thing. That means the bowels and gut are working and ready to start being used more than they are. Also, the heart pacer was turned off. His heart is finally in "sync" and can be doing its own pacing. His heart rate is about 100-120. Oxygen is 98-100 PERCENT!!!! His blood pressure runs 60's over 30's and can get as high as 70's when excited or agitated.

I have decorated the room with all the pictures from Tucker's school...they each made him a picture with a little note. I had time to laminate them before we left which is nice so the tape doesn't tear them up, then I can put them in his scrapbook of his "whole heart journey".

Everyone loves the I heart Tucker t-shirts. (we wear one every day) We have had so many ask "who is Tuckah"...ya know that good ol Boston accent. I think everyone in the CICU now knows who Tuckah is and how very special he is to a WHOLE lot of people.

More Progress on Day 10

2009-07-05T20:16:00.000-05:00

A picture to tide you over.....

It is nice to see the tubes gone from the chest. Tomorrow they will attempt to lay off some of the sedation and work on weaning the ventilator. It usually takes, they say, 3 days to get off the vent and much longer to get off all the drugs he is on. He will go through withdrawal as most are narcotics. (and when I say a lot, I mean A LOT!!!) He has had two open hearts before and both with the same drugs so it took more of them each time.....A LOT of them.

We have an awesome nurse tonight who has been our nurse several nights ....so I will get good rest again tonight.

Keep the prayers coming....they are definitely being heard.

Progress...

The PA line and chest tubes are out. We had to put some paralytic back on board while doing those two things but it is wearing off once again. They will chill him out for the rest of the day and start backing off on the sedation tomorrow..ever so slowly. Also increase his feeds possibly to get the gut going. The also took out the pee pee cath....so we are in diapers now. (yeah)

The rash isn't any better and there was a few spots under the tape around the chest tubes that almost look like blisters. We haven't gotten any thing back from the cultures that were sent yesterday but should have preliminaries sometime today. We have a small fever once again as well.

Keep those prayers coming.

The 4-1-1

Hello my Peeps. (hee hee)

The night started out with a little fireworks of our own. Tucker kept his pressures even when very agitated before bedtime. They ended up giving him a TON (and I a mean a ton...morphine, versed, adavan, and some clorafil)of sedation to get him to calm down and sleep. Then his pressure dropped very quickly, as soon as it all hit his system. So it was up on volume and up on the dopamine, his blood pressure med. He finally leveled off and went to sleep. The doctor tonight said it was amazing how much sedation it takes T21 kiddos...and it doesn't last very long either.

He has been quiet all night since. We were put on antibiotics for the fever, just in case. (the fever is actually gone this morning) We have the start of a bumpy rash on our side, under our chin and in our diaper area. They are thinking yeast from laying in the bed..so some powder was ordered for those areas.

I believe the agenda today is to get all the lines out of his chest now that his is off paralytic. The longer they are in, the bigger the chance of infection. The urine cath will also be pulled today and diapers will be used. (thank goodness..that has got to be uncomfortable as well) As these things come off and there are fewer things to hurt the sedation will slowly be lifted. Then the ventilator will be chipped slowly away for extibation. All of these things are things to come....but we have made a huge step in staying off the paralytic!! HUGE.

Thank you everyone for the prayers....as Candi said. "god is probably saying OK OK, I hear you" with everyone praying for him.....and that is an awesome awesome thought.

9 Days Post Surgery

2009-07-04T19:00:00.000-05:00

Saturday, July 04, 2009

About 6 hours off.....

and now we have spiked a fever of 102.8. Tylenol was given, clothes on our head...dont really think it is infection, white blood cell count is still the same, but will do some cultures....They are thinking it is because he is off the paralytic...but dont know for sure. They have mentioned that we might have to go back on paralytic IF we cannot find the source or it climbs higher.
Pray Pray Pray....sorry guys, I know everyone is putting in extra time on their knees today but nothing better than prayer.....it works!!!!

One hour and 20 min...still off so far

They increased Tuckers sedation medicines this go around to ensure he stays sedated to help him stay comfortable....we arent completely satified yet....we will see how the next hours go. Will update again soon. Again, this is the paralyzing medicine that we are talking, this will allow Tucker to move, start taking his own breathes...the first step of many.

Paralytic shut off.....now we wait

Happy 4th of July.....

The celebration of our Independence, the thankfulness of our freedoms.....today is going to be a good day. Everyone have safe travels and celebrations today.

Post Surgery Day 8

2009-07-03T21:17:00.000-05:00

Friday, July 03, 2009

They will be surprised....

if Tucker comes off paralysis tomorrow without trouble. The doctor just left and he said it would be a HUGE step if he did and stayed off. We are going to add some more sedation medicine on board, he has found that T21 kiddos take a little more to keep them sedated. Yeah, Tucker starts moving 15 minutes after the medicine is stopped, they originally said it would take a few hours to wear off.... SO, they are going to tweak that and turn down the nitric oxide all the way on his vent tonight, plus turn up the peep on the vent (the expiatory pressure)...giving him optimum chance of coming off.

Today is day 8 post surgery.....no signs of my Tucker yet. He is making steps but little ones. I know every step in the right direction is good, I know that! Don't get me wrong....but I really want my Tucker, the one that has to put his hand at my neck to sleep, the one that says MOM, MOM, MOM....over and over again, the one that asks to watch Jack and Little Bear. I want him to tell me NO and throw his toys....and to see that smile. OH that smile!!!

It is so hard being in this place. We have made some friends here and when heartache hits them, it hits us as well. It makes you want to stay in your room and become a recluse....no emotional attachments. A mother lost her son today, they had been here 3 months...he was doing well yesterday...we woke up today and their room is empty....he passed away. The walls have many stories....many tears and many joys.

Please keep Tucker in your prayers tonight....that he will have the strength he needs to heal, that his heart will relax and accept the new repair, that his lungs will accept and not resist,,,and that Todd and I have the faith to take what comes.

I LOVE good nurses....

We have had the same nurse the past 3 nights, Katie!!! LOVE HER. She is on the ball, a little OCD like myself, and just cares about her patients. Tucker even got dressed last night...thanks to her. I have gotten good rest and feel very relaxed when she is here watching over Tuck. I always appreciate the good ones when we have them because then a little of my stress goes away. THANK YOU KATIE!!!!!!

Recent Tucker Updates

2009-07-02T21:48:00.000-05:00

Thursday, July 02, 2009

a little bit like Christmas

Look what we got today for Tuck man..... He LOVES his hot wheel cars and I think there are atleast a dozen shoved is this basket that was delivered. Along with Caprison, crackers, a holder for the cars, bubbles, and who knows what else is in there. It is OVERLY stuffed full.

Thank you to my work family (NAG)!!!!! Thank you thank you Thank you. He will love digging through it as soon as he is feeling better.

Same as yesterday for today...

They decided not to try to wake him today. Give him another day or two since we made some steps in the right direction yesterday. Which is good actually...I started yesterday trying to find our local church here so they could come and give Tucker a blessing. I finally got ahold of them this morning and they will be out soon.....so a blessing on board before we try is nothing but a good thing.

So, the girls flights are in the air and it is just Todd and I. I have found a few moms that I knew about through carepages and have started some new "heart" friends.....it is nice to talk about those things we all go through and to be able to relieve some frustration. Knowing they know exactly what we are going through or have been through is a great comfort....not that I would wish for anyone to go through what we have.....

Todd is down helping Trisha (Johnnys mom) with her computer so she can webcam to her girls this weekend. They were supposed to come up and spend the weekend but they came down with colds so they wont be able to come up....she is really bummed. Someone suggested (I believe it was you TINA....smart lady)a webcam call to the girls. She has been here since the 10th of June and is missing them, as any one would.

I am going to curl up with the 2nd book of Twilight....yeah can you believe I am reading them. Sheena was reading them, Alisha LOVES them...so, even though I am not a vampire person, I am reading them. They are more like a love story with bits of "self control" and good vs evil in them. I actually enjoyed the first one.

Prayers for another quiet, little steps toward recovery, kind of a day.

Wednesday, July 01, 2009

Good day...

Lets see....we made a small amount of progress today...but progress!!!! We had our LAP line taken out, this is the line that measures pressures in the left side of Tuckers heart. (the left side is the side that didn't use to work and was corrected during this surgery) There was no bleeding, which was good. (they did have blood in the room ready for transfusion just in case--with all the heparin he is getting bleeding can become an issue) The output is still more than input which means he continues to get fluid off. His heart, if only intermittently, started beating in sync with some off sync times in between.... a good sign that a pacer wont be needed for a long amount of time. The dopamine, which is blood pressure medicine, has been turned way down as he is keeping his blood pressure up on his own. And last but not least..his blood gases are excellent so they got to go down on his ventilator settings. All good things and a quiet day.

Tucker is looking nice and comfortable, his capillaries refill as soon as you touch his finger tips..and for those of you who watch Tucker you know how purple he USED to be. 100 percent oxygenated blood....NEVER did we think Tucker would meet that. We are not going to be able to keep up with this boy very very soon......again, all good things!!!

Tomorrow we try again on lifting the paralysis....

Tucker's Surgery Updates, Day 7

2009-07-01T18:49:00.002-05:00

Everything was pretty quiet today. Tucker had one chest tube removed today, which is great! They will try to wake him again sometime on Thursday. Please keep Tucker in your prayers. Pray that he has the strength to come around tmrw. Below is an update for today, Wednesday Day 6.

What will today bring....

Last night was quiet but busy. His arterial line in his groin, which has the line that they messure his pressures in, this is total pressure not pressure in his heart...this is a blood pressure line that the needle up into the vein.....went bad. So they had to find another arterial line to put in. They finally got it, after several tries and two different Attendings. It was after midnight and things leveled out so I went to sleep. Didn't hear when they came in to do yet another i.v because the one in his thumb went bad, so another went into the foot. They are going to run out of spots soon and we aren't even awake yet.

I believe they will pull the lines out of his heart today and close the drain tubes. Other than that I don't think they have anything planned but they haven't done rounds yet....so I will post later as well.

Tucker got a bath, his tape changed on his precious face, he got a bath and his bedding changed....it was a busy night for the nurse.

Tucker's Surgery Updates, Day 5

2009-06-30T09:51:00.003-05:00

OK .....Warning I am going to CUSSS....

Dammit Dammit Dammit. We went back to paralysis again. His pressures are just too high when he really wakes up. He even opened his eyes at us. I sang to him and he calmed for a minute but started back up, daddy talked to him and he calmed for a minute....then back up and didn't come back down until they put him under....no more moving and grooving for him for another few days. They are going to pull the lines that are measuring the heart, the one in the left Dr Del nido wants to go ahead and take it out, it isn't meant to be there for long periods and we can see what is going on by the pulmonary line that will still be there. (this is the line that was pulled out twice today and works half the time) They will also do another Echo to see what the heart looks like after the wake up time we had, make sure function has not changed.

Todd and I are heavy hearted once again. We know this is the way it is, the way it has to be. We don't want any harm to our precious boy...but we cant help but feel disappointment and sadness.

MAYBE....just maybe

OK, so we have been of the paralyzing medicine for a little over 2 hours, came off it around 4ish. We have some wiggle and we are keeping our pressures where they are supposed to be. We are staying very quiet and not touching as well....anything to help keep him in a good place and off the medicine...heading in the right direction.

We have had quite a day....I had to talk to the charge nurse requesting that we do not have the same nurse again. I am sure she is fine, and good at her job....however she is just not confident enough for me. I have many questions, I watch intently, and I hover. Immediately this morning she accidentaly pulled on the chest wire and pulled it enough for it not to work. THIS is the wire that measures Tuckers pressure in the left side of his heart, something we NEED to have... it took one hour to get it to work, and while putting the dressing back over it, she pulled it again.!!! Now it works sometimes and NOT sometimes. Everyone is human, everyone makes mistakes,,,,but I have no confidence in her now. I want someone that is confident and knows their job, enough not to be intimidated by me. I am sorry, but she just doesn't cut it. I know I am bad....but darn it all, this is my son she is to be caring for. I hate doing that, I have only had to do that one other time in all the times Tucker has been hospitalized....but I have to feel comfortable that he is getting the attention and care he needs.

Soooo, pray tonight that Tucker continues to do well moving around...that we continue to progress forward. IF we can continue to do well after 12 hours or so they will pull the chest tubes....then we will work on the ventilator. OH, by the way,,,,he is breathing over it right now, on occasion...all good signs.

Today will be a big day for Tucker as they are going to try and wake him a little. He needs all the prayers and love you can send his way. Mommy posted an update early this morning, so that's posted below. I am awaiting another update soon.

Thank you, everyone, for all of the love and support you have given to Tucker and his family. *hugs*

Update:

OK, so yesterday was extremely quiet. We actually got out and walked around..Sheena and I were in flip flops which was not the best idea. We saw Fenway park and tried to find the Harley shop but when we did, they had closed it down. Then we ate some dinner and came back to the room. The girls headed back to the sleep room and Todd and I hang out until I couldnt keep my eyes open anymore. I think I was alseep way before 10 and had very little awake time last night. We had a great nurse that takes good care of Tuckman. (as you can see the stuff on his forehead is gone, the first of many things to be taken away....yeah)

Yesterday they worked on getting Tucker in the right place with the medicine mix. They added methadone and ativan, on top of the morphine. They are a constant drip. Then when they mess with him he gets bullous doses of versid and morphine. They are weaning him from the morphine ever so slowly as they tend to withdrawal after days on it....hence the methadone and ativan. With this new mix his pressures have stayed in the teens where they want them...but he isnt awake and moving around either....so we will test him again today.

They did an echo yesterday as well to check heart function. It all looks really good. His left side is pumping, very little leakage around the valves....very little as in hardly worth mentioning the doctor said. He is still peeing very well, getting that fluid off. They do an EKG once to twice a day right now. His heart is currently being paced, meaning it is on a pace maker making it beat so many times in a minute. This is done so that the heart is beating fast, pumping more blood through it, trying to make it used to the new plumbing. Each day they come in and take the pace off, letting Tucker do the work to see what the heart rate is and to ensure it is pumping in sync. Well, Tuckers heart is not in sync. His rate is good but the heart is not pumping all at one time, one chamber pumps then the next currently. This was not the case right after surgery so they are not too concerned at this time. Sometimes it takes a while for the heart to get back "in sync". They would be more concerned if he had never, since surgery, been in sync...but he has. So the pacer wires will stay in until that fixes itself. Worse case, absolute worse case, is that the heart doesnt and he has to be paced all the time...then we would look at putting in a pace maker. They really dont anticipate that but it is always a chance.

We received a care package yesterday from Kim, Wills mom. It was like Christmas... a pillow case for Tuckers pillow, a laundry bag, laundry soap and change for the machines, a razor (OHG how I needed that)all kinds of goodies. Thank you Kim. We also received dinner from Michele, I might have mentioned it...I cant remember but wanted to say thank you to her as well. (Enchiladas were great!!)

So today is just about getting the paralyzing medicine off and let him move around a little. The goal is to get him off the vent within this week....so things could progress quickly, praying for that anyway. I will post when I get new news or something happens other than that you can assume all is quiet.

Suregry Updates

2009-06-26T12:39:00.005-05:00

Updates for Sunday, June 28th, 2009:

Heavy heart...so starts the roller coaster

I find it hard to sleep with Tucker in the shape he is. I am struggling with the fact that we brought him here a very happy, loving , active boy....and now he is hooked up to so many machines! I am struggling with "the unknown".

We know today would have been a world record on waking up from this surgery....it was a major surgery...but because they tried and we failed, because we are now blowing i.v's, because we are on that up and down roller coaster of good numbers vs bad numbers on saturations/blood pressures/arterial pressures.....the reality of the whole thing is setting in. We have been in Boston one week....it isnt even July 1 yet. We still have a lot of up and down days ahead....and to be very very honest....I just dont know how we will get through it.

Tentions are high, nerves are frazzled...I think if we had not been here before then we would not be so fast to be frustrated but we have been in this spot twice before....two other surgeries that we have gone through on Tuckers heart.....and to know the long road that we have ahead is hard to know.

Sorry about the downer post.....just a lot on our minds and hearts.

not today....

Well we are back to sedated, paralyzed.....he was responding to us too much....pressures were up. So we will try again another day.

Maybe....

Well, they have the new i.v. in and the medicine switched to it. They are going to run all of them at once until they see the sign of pressures coming up,as not to make there be a lull of no medicine. Then they will shut the old one off and take it out. They have turned the medicine off that paralyzes him, so in about an hour or so we will know how he is going to tolerate it. As long as his pressure stays good we will continue to keep it off....if not then we go back to heavy sedation. PRAY PRAY PRAY.....

Update #17:

OK, so last night , or this morning whichever you want to call it, the groin re-thread didn't work. They tried an i.v. in his right hand, that didn't work. (A break was taken to look again) Came back and got the groin re-threaded on the 2nd try. So it is drawling blood nicely again but the pressure numbers are not consistent.
So, they just rounded and here is the plan for the day. A new line will be put in the other groin and in his arm/hand/wherever they can find it. The line in his neck is now misplaced and they cannot call it "central" line any longer....but they can continue medicine through it. That line will be taken out once the other i.v's are put in. He has pee, did good output all day yesterday and we have officially put out more (500 cc's more) than we have taken in, which is very very good. They dc-d (discontinued) the dylaril (the other diuretic to get flood off) and he is now just on lasix. They talked about putting something in his belly and getting the gut going....and after all this is done they will try to wake him. Wake him as in take off the medicine that paralyses him. He will still be sedated but he will be able to move his body. At that point, all pressures, everything will be monitored very closely..and in all reality he might just have to be put back to sleep. They usually see pressures go back up, oxygen level in blood go down, heart rate go up...all signs showing he is not ready....they have warned me so we wont freak out if and when it happens.

This is what I will not be able to handle. Him seeing us, feeling all the stuff hooked up,,,,and he is going to freak out. This is what I don't like, the helpless feeling of him laying in the bed, AWAKE, and I cannot do anything but try to sing to him, touch his head and try to soothe him.....this will be the longest and hardest day for me.....

So that is the plan for the day....but we all know plans change. It is the "game" that is played during surgery, during recovery.....plans are not in our hands or the hands of the doctors....the plans are on Tucker time.....slow and steady.

Update #16:

Well....it is like 3am and they are doing a procedure at Tuck's bedside. His i.v. that is in his groin is clogged or something. They cant drawl any blood from it....so they have to thread another one through the vein and take this one out. This particular spot also has a line in it that monitors the arterial pressure. This is the i.v. that they drawl all his blood gasses from, so as to watch all the settings on his ventilator, to ensure he is properly oxygenated.

This is the same vein that they used to do the heart cath on Tuesday-it goes into the heart, the vein that is. I can vaguely remember this being done at one of Tucker's other surgeries as well. Although at that time we didn't have one in the groin and they put one in at bedside. Tucker has terrible veins in that you cannot see them and they seem to collapse and go bad. It is not uncommon during one of these visits that he gets new i.v's a lot. The first heart surgery they had done so many that they ran out of spots and had to put one in his head....UGH. It was a good, thick vein though and stayed until they took it out because it was time to take it out.

Updates for Saturday, June 27, 2009:

Update #15:

Dr Del nido came by. The issue we are having with Tuck is the pressure on the left side of his heart is running in the high 20-30's. With the left side of his heart not being used to all the blood flow this is normal, however it should be coming down. As long as they keep him comfortable, heavily sedated, his pressures stay in the 20's. The higher pressure causes fluid, which backs up into the lungs. Ideally we want that pressure in the teens. What they will do is continue to keep him very comfortable and attempt to get rid of the fluid from the surgery, via pee. As his fluids come down that pressure will also come down. They will attempt to wake him, however if the pressure in the left side goes back up, they will sedate him again and give him more time to recover. This will be the balance we will keep attempting. He also said on Monday or Tuesday he would re due an echo cardiogram to look at his heart. Make sure that left side is not oversize, that the valves are not leaking and that it is working correctly. Right now he sees no need as everything is in line...again as long as they keep him sedated, if he starts to wake it all goes haywire. The right side, which was doing all the work before the surgery, has pressures that are great...right where they need to be. Again, this is all things they have seen with this type of surgery, they assure me, so it is finding the right mix for Tuckman, getting fluid off his body, and letting him rest and adjust.

Update #14:

Rounds went pretty much the same. Today they will keep Tuck sedated however they are going to up morphine, taking away the versed drip which causes hypotension(low blood pressure). They also put some more diaretic on board to help the "pee" process. He is holding some fluid so he needs to pee it off. More out than in.....so today pray for PEE!!!

They think they will start waking him tomorrow, that may change though...it is day by day and ever so slow making sure Tucker is ready. I am sure all of you remember the saying "Tucker time"....we are all on Tucker time now. I so want to hold him, kiss him and here him say "mom" "mom" "mom" repeatedly until I answer.....and to see his smile. When the smile comes then we will know he is better......

The sun is finally shining here. My "bed" is a cutout with windows all around, it sets on the edge of Tuckmans room...so the sun will be nice to see today. I will post a little later as well....for now all is quiet.

Friday, June 26th, 2009

Update #13 9:29pm CST (10:29pm Boston):
From Tucker's Mommy

Tucker in flight to Boston.

Tucker resting after his heart cath.

Well, today was a lot of nothing going on which is good. They continue to take the setting of nitric oxide down on the ventilator. His blood gases came back good still, so they think they will wean it down a little more tonight at rounds...which will be about midnight.

He is twitching a lot, the sedative isn't working very well anymore...he is out but not fully. They think he can hear what is going on around him so we still are not touching and whisper....he is going to be so mad at us when he gets up.

We have turned a corner in there is more output of pee vs input...awesome!! Dr Del nido is on the floor but we haven't seen him yet, not sure we will.

We had a few visitors....thank you to Michele for sending out emails to the area Down Syndrome Congress. Jessica and Dawn came by, both have DS girls..both had heart defects.....it was so nice to see a smiling face. They brought comfort food CHOCOLATE....and a book and shirt that says Cape Cod on it for Tuckman. Also a gift card for the pastry place in the hospital....YUMM! We also got to see Johnny's mom Trisha. They are on the ICU floor as well. Johnny came from Cincinnati for a heart transplant,,,,,NOPE, Dr Del nido fixed it instead. (he will require one more surgery to fix a valve that leaks..but that is nothing) I have been following his story for a while now and knew they were here. She let me know the very first night she had BAGS of comfort food and to come down anytime we could have a junk food night....so nice, people are so nice and caring. It is just amazing. Tucker has brought out so much good in everyone....

We got out and wandered for lunch and dinner tonight since they told us we should take advantage while we could. It seems Tuck doesn't want to be asleep and is fighting it. Soon he will be awake and we will not get the chance to wander....so we found a book store. All of us girls have read one book already and have started new ones. We found a pub where we ate and Todd tasted the local beer...then it was back to the room. I am OK for a little bit to leave but I am much more comfortable being in here with Tuck, even if nothing is going on.

I haven't taken any new pictures of Tuck. Nothing has changed but as soon as things start coming down, all the pumps and stuff....pictures will be pouring in. It is great to see the pumps slowly be discontinued. The room looks tiny now but will be big again as soon as it starts.....so in the meantime i am posting pictures of Tucker's flight to His Whole Heart......he did very well on the plane. One picture is of him with his earphones on, listening to his signing time music, and another is of him after his heart cath this week.....sleeping like the angel he is.

I cant thank you enough.....keep the prayers coming. We have a ways to go yet. HUGS TO EVERYONE!!!!

Update#12 12:23pm CST (1:23pm Boston):

So many of you have been asking for the addy to send Tucker and his family gifts. I am ready to pass along that information.

Children's Hospital Boston
300 Longwood Avenue
Boston, MA 02115
617-355-6000

Attention: William Bryant
Room 27
CICU, Floor #8

PLEASE, PLEASE remember, NO FLOWERS or PLANTS of any kind will be allowed to be delivered. Do not send them. It is a medical rule with patients in the Cardiac Intensive Care Unit.

Also, please notice that you need to send them to William instead of Tucker. Don't worry, William is just how the hospital keeps track of Tucker.

If you have any other questions or concerns, please contact me directly. crackerjacks51603@yahoo.com

Update #11 From Tucker's Mommy

Love the banner! It turned out great!

Hey everyone! Its Karen. I am sitting beside Tucker, cant touch, but am here and I feel such relief. My baby boy is pink and doing the very best that could be expected. The "no touching" is due to the faint possibility that he is a little bit aware of his surroundings and we don't want to get him upset. His blood pressure is finally stable so we are watching but not touching. He gets upset and his pressures go haywire when they suction his tube....so they are thinking that there are times when he can feel or knows what is going on, but is paralyzed...can you just say OMG. The best I can explain this is, Tucker has had these medicines so many times that they don't work as well, and it takes more and more to keep him sedated and under. He is at his max for his blood gases....so we are doing a transfusion to try to get more blood flow therefore more sedation. Until that time..do as little as possible to him.

They did end up cooling him down. When a body is warm the vessels are relaxed and the blood pressure is low. They needed his pressure to be higher so they cooled him down 2 degrees by putting him on Tylenol, some ice blankets and turning the air down in the room. This is to let the heart rest and not work so hard pushing blood to the body. This was part of the solution in getting his blood pressure under control. It took about 4-6 hours for them to accomplish the lower temp. This also keeps infection down as bacteria cant grow if it isn't warm and cozy for them.

I stayed in the room with Tuck and Todd got a room downstairs in the hospital. I got a few winks ..enough to get me through. I like to be here, listen to what everyone is saying, figure out what machine does what, what they are adjusting and why....I had the nurse dictating everything she was doing as she did it last night. Tucker seems more comfortable today than he did last night...as they say, the dust is settling.

The banner is hung above his bed...the nurse loves all the pictures of everyone! Gotta make Tuck know how much he is loved..not that he doesn't know it already. Sissy got him a stuffed animal already, it is being used as a "prop" for his arms, legs or whatever else they need to move around.

Plan for today is pretty much the same as last night...adjust and keep him comfy so healing can continue. They are pacing his heart, stepping up the beats so as to work the heart and get the blood flowing through that left side. They came in and tested his heart rate, EKG, and it is a NORMAL rate, NORMAL heart EKG....it is a little slow for where we are right now in recovery but if it was a few days from now it would be GREAT!!! So they will continue to pace his heart at the higher rate for a while longer.

Cardiologist just came in....he said IT COULDN'T BE BETTER!!!!! He is peeing, his drain tubes are slow.....all good things!!! GO TUCK GO!!! We are so proud of our superman!!!

OK...I think that is it for now. We are in the room, Todd and Sheena just got back from showers. Hunter is still sleeping. So we are settling in.

Update #10 8:11am on Friday Morning (9:11am Boston):

Tucker had a fairly quiet night after surgery. His blood pressure was a little low and so this morning he is currently undergoing a transfusion. Mommy said she may have time to update with more details soon.

Remember to keep checking Twitter for small updates through the day. Thank you so much for all of the wonderful prayers!

Update #9 10:45pm (11:45 Boston):

Tucker, 11:45pm Eastern, 06/25/2009

I know I said no more updates, but I couldn't resist.

Look at this handsome little guy!! This is a cell phone pic but I know Mommy and Daddy are taking tons more with the digital. Hopefully we can get some more in the coming days.

Urine output is fantastic and there is little draining from his chest. I want to also let you know that Tucker came off of Bypass fine and did not need any assistance with ECMO or anything. All of those tubes are draining his chest and supplying a little extra O2.

Update #8 8:34pm (9:34 Boston):

Tucker is out of surgery!! Yay!! Karen and Todd and sisters have not seen him yet but they will within a few minutes. Tucker will be moved to his room shortly as well. So here are the details.

There were NO SURPRISES during the Whole Heart Repair. Dr. Del Nido said it went very smoothly and very well. Tucker is currently at 100% O2 which is awesome. he's never been able to reach that even when on assisted O2. So that is wonderful!

The left side, which was the "bad" side of his heart, is performing very well. It's learning how to operate and pump the blood through. Before, the right side was doing all of the work.

Both sides of the heart are doing what they should, however, the pressure in his heart is a little high still. This will correct itself once the right side realizes it doesn't have to do all of the work and when the left side starts growing bigger and stronger. The high pressure is normal but is being monitored of course.

Tucker will remain heavily sedated for the next 3-4 days. They want him to be still and relaxed and let his "new" heart learn to work the proper way; to heal. Tucker is also in-tubated and will remain so until he's awake and they are sure everything is progressing as it should.

And finally, another VERY GOOD piece of info, Dr. Del Nido is sending Tucker into recovery with his CHEST CLOSED. This is fantastic!! The doctor felt that everything went so well that there was no need to keep Tucker's chest open for the next day or so. In Tucker's previous open heart surgiries, his chest was open for a couple of days after.

So, that's what I have thus far. It's been a long day and it was nice to hear the relief in Karen's voice. We are so happy that things went so well. Unless something comes up and The Bryant's feel the need for an update, I will not post any more updates until Friday morning.

The next 24-28 hours are going to be critical. Tucker will be monitored very closely. PLEASE keep those wonderful thoughts and prayers coming his way.

Update #7 5:56pm (6:56pm Boston):

Tucker has come off Bypass. The surgeon will be out to speak to the family within the hour. At that point I am sure we will have more info to report, specifically in regards to how the surgery went.

Update #6 3:45pm (4:45pm Boston):

Tucker went on Bypass about 10 minutes ago. Tucker's heart is being worked on now.

Update #5 2:46pm (3:46pm Boston):

Surgeons are still dissecting. Tucker has not been placed on Heart and Lung machine yet.

Update #4 2:25pm (3:25pm Boston):

There has not been any additional information since the incision. Karen and family are hanging out in the waiting room "eating junk food and watching Grease 2".

I'm going to take this update and pass on some important info about what to send Tucker and his family if you choose to do so.
First things first, NO FLOWERS will be allowed in Tucker's room. Please do not send flowers. Balloons, Cards, Toys and Stuffed Animals will be okay.

Other things you might consider sending the Bryant Family are fruit baskets, goodie bags, and meals. There is a Bertucci's accross the street from the hospital that will deliver. (Blackfan Circle) We all know how hospital food can be sometimes.
There is also a CVS available to them and gift cards might be a nice idea for any snacks or such that they need.

And finally, to help pinpoint a time frame, Tucker's Whole Heart Repair will take around 6 hours. Give or take. With that in mind, it could be around 7pm (8pm Boston) before he is out of the OR.

Update #3 1:10pm (2:10pm Boston):

The first incision has been made on Tucker in the OR.

Many of you are asking about an addy to send flowers, cards, balloons and gifts. This will be fantastic, but please wait to send anything until Tucker is out of surgery and recovery and has been placed in a room. Boston Children's is a massive hospital and the staff will be running all over trying to locate him. Once Tucker gets his very own room, I will make the info available. Thank you!

Update #2 12:05pm (1:05pm Boston):

The time has come and Tucker has been taken back to the OR.

Update #1 11:56am (12:56pm in Boston):

Tucker and his family are waiting to be taken back for surgery. Tucker was doing good this morning with the exception of a slight fever. They believe the fever is from the 14 coils put into his heart yesterday. The fever is common after heart coils are placed.

As soon as Tucker goes back to the OR, I'll update. Keep the prayers coming.

ORIGINAL POST BELOW.
ALL UPDATES ABOVE and on Twitter.

19 Hours Until Surgery

2009-06-24T16:36:00.004-05:00

Tucker has been cleared through pre-surgical testing and will undergo the surgery we have all been waiting for. Tucker and Karen have been in Boston since Sunday night and have underwent 3 days worth of testing. Every test you can imagine along with blood-work has been performed to ensure Tucker was a match. (Daddy and Sisters are there too.)

Tucker is a perfect match. He's on the surgery schedule for Noon tmrw, Thursday.

I have asked before but I am asking again, please keep Tucker and his family in your thoughts. Send him good vibes, prayers, happy thoughts, and well wishes.

Thursday will be a hard and long day for Tucker and his family. If you would like to send them a message or a special prayer, do so by leaving a comment or emailing me at crackerjacks51603@yahoo.com

I will be able to send them directly to the Bryant's through out the day.

I will be at hand to update as news becomes available. You can check here or over at The Bryant Family News. I'll also be Tweeting any small updates, marked #Tucker. You can follow me (Alisha) on Twitter.

We "Heart" you and your family Tucker.

Godspeed Little Man

We are here...in Boston

2009-06-21T21:54:00.000-05:00

It is 10:45 here. Tucker is asleep down the hall in our room. I cant really sleep I thought I would make use of the computer.

Lets see. We were delayed in Wisconsin by 1.5 hours. Tucker did great on the flights. We are two blocks from the hospital by stroller. The room we have is just like Ronald Mcdonald rooms are at Mercy, just more of them. We can buy groceries and cook here which will save money...thank goodness. We have a flat screen in the bedroom so Jack was watched tonight until Tuck fell asleep. I have some pictures already to post but dont have a hook up for it until Hunter gets here on Wednesday.....so I will post them then.

We didn't eat dinner, but thank goodness Michelle, who picked us up, left us a goodie bag of fruit and some breakfast stuff.....we had dinner on her! She is so nice, has a son that had a heart defect and was in the Childrens Hospital at one time as well. Nate is about Tucker's age and also has Down Syndrome and is TOOO darn cute.

Well, I am going to go lay down, maybe read a little. 6 is going to come early. I will post tomorrow after our preadmission testing....that is chest xrays, blood draw and such... sweet dreams everyone. I will be dreaming...laying beside my handsome (octopus) boy!!!!

F O U R days.....

2009-06-17T12:30:00.000-05:00

UGH

5 Days LEFT.....

2009-06-16T10:39:00.000-05:00

For a long time now Tucker has given kisses, sometimes you really have to work on him to get one, most of the time they have been “open mouth, lips on cheek” kisses. Just recently he has learned to pucker and give real kisses. Never has he asked to give you one….except last night. He was watching his movie and he wanted me to sit with him…so I did like a good mommy should. As I got to the floor, pretzel in one had, he said “isss” and gave me a kiss. He gave kisses last night over and over again as Todd and I were saying goodnight, he didn’t want to have everyone else kissing and not him, so it became a game…..he would get kisses every other one. Sissy has started requiring kisses before piggy back rides, or play….she tells him, “one more kiss, one more kiss” then he just starts kissing her over and over on the cheek…. What an awesome feeling, to deserve and receive a KISS from Tuck man…..

(so many things come with a kiss, the act itself requires many muscles, years of therapy for Tuck…..and WE get to reap the benefit.)

9 DAYS LEFT.....

2009-06-12T11:15:00.001-05:00

I have to share a story….My mother, who has fought cancer twice and won, came over yesterday to watch Tucker for me. She was there to get him off the bus..they ate and played hard. He went down for his nap at 1pm.
I received a phone call from her later in the day…she said “Tucker is so funny, you didn’t tell me he likes to climb up on his refrigerator”. OOOPS, sorry. “He would get up there and just laugh and laugh, then needed help getting down”. Yup that is his new found fun. “He slid down the slide, but not until I would say READY, SET and then he would say GO and slide”. She said it didn’t take him long to fall asleep, just a few minutes, but he required her hand to hold…..

My mom has been there for EVERYTHING with Tucker. (She was diagnosed with cancer when I was pregnant with Hunter, had radiation right after she was born and another bout 3 years later.) She was there every day, at the hospital, with Tucker, either relieving us or just to see him. She knew how to do the mickey button, she knew what medicines he was to get and made sure nurses were giving the best care…..it has been a road that hasn’t always been enjoyable. She has always worn the hat of “protective” Grandma…”is he OK”, “what if”, “how do I”…. Now that Tucker is a typical toddler, eating by mouth, walking, communicating….it is SOOO nice to hear how fun he is to her. I am sooo grateful for so many things in my life…But my MOMMY is right up on the top.!!!

11 Days left...

2009-06-10T11:18:00.002-05:00

I had a hard day yesterday…I think it is going to get harder and harder as we get closer to leaving. I cried off and on all day, feeling sad that some people just don’t get it. We are so very fortunate to have Tucker, each day, each activity he masters, each kiss and hug, each and every little thing he does is a testament that miracles happen.

Last night when Tuck and I went to bed—he likes to lay on your arm and snuggle in. He laid down and I instantly smelled his hair, that Tucker smell. I asked him “you ready to fix that heart of yours”, he said “ya ya” shaking his head all the way. “your going to be strong right”, he said “ston” and raised his arm like he was flexing his muscle (not sure where you learned that exactly)…..”I love you sweet boy”….and he said “uv u”….a conversation he acted as though he completely understood.......and maybe he did.

ONLY 12 DAYS LEFT!!!!

2009-06-09T11:12:00.000-05:00

OK…..listen here followers…(yes I am being sturn….smiles)

Pictures for Tucker’s banner will be printed this next week so I have time to get it together and possibly laminated. Send them to karenb526@aol.com.... Thank you to those who have already sent “love”….it will be a pleasant sight while we are in Boston…..

Countdown-13 days left

2009-06-08T13:05:00.001-05:00

What’s in a name? How did Tucker get his name?

Well, Tucker’s real name is William, after Todd’s dad. His middle names, Charles and Tucker, come from my grandfather (Charles) and Tucker was my maiden name.

I wanted his first name to be Tucker but we couldn’t find something that went with it for a middle name, Tucker William didn’t flow like the prestigious name he needed and deserved.

WILLIAM CHARLES TUCKER BRYANT—now that says it all doesn’t it.

The countdown--14 days left

2009-06-07T12:17:00.001-05:00

UGH....it is going fast.

I cant believe two weeks from today Tucker and I will be on our way to Boston for his heart repair. I find myself trying to do things that we havent gotten to do yet....like catch lighting bugs or be outside jumping on the trampoline at 920 at night, a wagon ride around the neighborhood...things that I knew we would always do but now feel rushed to get them in. Bad right? That I think I need to live life to the fullest these next few weeks...getting things in that give us great memories. This procedure has been done over and over again....I have nothing to worry about but still I do.

Tuckers health has always been an issue and we have been so careful not to expose him when we didnt have to, not to be outside more than we needed to and now I feel I need to let him ...just in case. UGH......it is not a good feeling, the feeling of "what if.."

Hang on to your kids, love them, give them hugs,,,,enjoy them and cherish every single moment. Time flies by....and then what

Countdown--15 days to go

2009-06-06T08:42:00.001-05:00

I was completely ready for Tucker to come home. The room, was a walk-in closet converted into a perfect nursey, tucked inside our bedroom. It was painted a golden yellow with navy blue baseball bedding. There were tubs of clothes just waiting for him to be dressed in. My mom and I did some garage sale shopping, thrift stores and clarence shopping before he came. Needlesstosay there were lots of clothes, all in tubs, all marked with the sizes....just ready to be worn.

His "nursery" was 5 steps from our bed. It held his bed, dresser, diapers and anything you could shove under the crib. It was soooo nice to have him in our room, yet something that we could call his. It was a perfect solution to not enough room and being within "ear" distance for anything we needed to do.....which back then was feeds via NG tube every 4 hours. Man that seems so long ago.....

The countdown....16 days to go

2009-06-05T11:02:00.002-05:00

The only requirement I asked of Tucker while he was in the womb was to make sure he screamed, very loudly when he made his entrance into this world. I would rub my belly and remind him of his one duty…..let mommy know you are OK, make sure you use those lungs…give me a good cry.

When I went into labor, Chiefs opening day on Sept 11, 2005….we were watching the ball game between contractions. Everyone in my family was in the room; my Grandmother from New York was in town, nieces, nephews….everyone was there to support us and our journey with Tucker.

I can remember everyone being scattered when it was finally time to push…Tucker’s team of doctors coming in and the hush that came over them standing in the corner waiting for the delivery.

I got to hold Tucker twice before they rushed him out of the room and into the NICU for observation and preparation for transportation to the Children’s hospital. I can still remember…he was wrapped like a papoose, tight as can be, white hat on his head…he opened his eyes and stopped crying as soon as he was handed to me. OHHH those eyes….his eyes say it all. He takes everything in, looks into your soul almost….it was the first time but not the last that his eyes would calm us.

Tucker Makes The News

2009-06-04T11:28:00.001-05:00

Finding the melody

News - Community News

Written by Ray Weikal

Thursday, 04 June 2009 00:01

Local child with Down syndromeprepares for innovative open-heart surgery

Editor’s note: Since April 2006, Sun News has run a series of articles following the family of Todd, Karen and Tucker Bryant and the challenges they have faced with Tucker’s Down syndrome and heart condition.

The best gift Todd Bryant will get on Father’s Day is saying goodbye to his son.

Bryant’s youngest child, Tucker, will leave his Northland home Sunday, June 21, for cutting-edge surgery to repair his ailing heart.

Anna Faltermeier/Sun Gazette — Tucker Bryant hangs out on the coffee table as he watches a sing-along television show May 28 with his parents, Todd and Karen, at their home in Platte City. Tucker will have heart surgery in June in Boston.

Since the day Tucker Bryant was born with Down syndrome and a failing heart, he’s never had an easy life. This will be Tucker’s third heart procedure in as many years, so he’s an old hand at this stuff.

"He’s a ball of fire," Todd Bryant said. "He finds the melody in everything."

For Mom and Dad, though, it never gets any easier. But this should be the last time they go through this ordeal, if all goes well.

Karen learned of her son’s condition early in her pregnancy after a check revealed Tucker had too many of the chromosomes that act as the body’s genetic building blocks.

Anna Faltermeier/Sun Gazette — Tucker Bryant plays with a toy car May 28 at his home in Platte City. One of Tucker’s favorite things to do is dance. “He’ll dance to anything that has a good beat,” said his mom, Karen Bryant.

The couple quickly set aside the abortion option and set about learning how to care for their new child with special needs.

It’s a decision Todd and Karen Bryant have never regretted, especially when they watch Tucker hang up his coat, play, laugh and learn in his new life as a student in the early childhood education program in the Platte County R-3 School District. Tucker’s condition makes his parents attuned to these small, satisfying moments.

"It’s not very many parents that get to notice those little things," Karen Bryant said.

Surgery in Boston

Tucker was never supposed to go to Boston, where his upcoming surgery will take place. But last October, the Bryants learned that Tucker’s heart and lung pressure were too high and that the previously planned final operation at Children’s Mercy Hospital was dangerous enough to be cancelled.

Then a chance encounter at a Christmas party changed things.

Karen Bryant decided at the last minute to attend an event thrown by the Kansas City Down Syndrome Guild. She happened to sit next to Kim Knipp, whose 2-year-old son, Will, had a heart condition similar to Tucker’s.

Knipp told Bryant about her son’s progress following a relatively new procedure performed by Dr. Pedro del Nido at Children’s Hospital in Boston. It was a permanently repaired heart, Knipp explained, like a car with a rebuilt engine.

Del Nido had found a way to use surgical robots, digital imagers and other techniques to repair congenital heart defects in the tiny, delicate bodies of children like Tucker. Del Nido’s work garnered a $5 million grant from National Institutes of Health.

Within a month, Karen Bryant had lined up the procedure for her son.

Knipp connected Karen Bryant with a cadre of other moms going through similar experiences. They’ve helped the Bryants sort through the hundreds of small details that demand attention when planning a trip like this.

"Since I’ve met Kim, she’s put me in the middle of that network," Bryant said. "It’s been great having those moms."

On June 25, the power plant of Tucker’s body — his heart — will be rebuilt. Six weeks of in-patient recovery will follow. The family has hopes for a major celebration when it’s time for his fourth birthday this fall.

Despite the pain of surgery, the fear of not getting help to Bryant in time when his oxygen levels fall too low, the millions of dollars in medical bills and thousands natural moments of stress for any parent — despite all that — the little guy’s heart is too strong to give up, and that’s enough to provide the strength needed for his mom and dad.

"After a while, you change your mind about wanting to take away your child’s Down syndrome," Todd Bryant said. "You won’t want to change a thing. It makes him who he is."

HELPING TUCKER BRYANT

To learn more about Tucker Bryant and his family, or to make a donation to help with his medical bills, visit bryantfamilynews.blogspot.com.

Staff writer Ray Weikal can be reached at 389-6637 or rayweikal@npgco.com.

The Countdown-17 days left

2009-06-04T08:52:00.001-05:00

I found out at 21 weeks that we were having a BOY!!! After having a girl a boy was a SWEET gift. They just had to be easier to raise than a drama queen.
At that same appointment I got to see Tucker’s toes, his heart, his nose that looks like mine. He was moving and growing at the right rate. I was over 35, barely, so close “watchful” eyes were upon this pregnancy.

At this same appointment a well trained eye saw a problem, a few signs…a heart with a hole in it, a “sandal” toe, thickening of the neck. I thought the “sandal” toe was so darn cute….the big toe hanging out there, separate from the others. We got sonogram pictures of it….he was so perfect!!!

It is amazing how, to the untrained, loving mother, cant wait to hold him and love him eyes, we see NO wrong. I didn’t see anything they did….just a boy that would take my heart and run with it.
I think Tucker sees the world as a loving mother does her unborn child and what a great thing that is. Maybe if we all did that, maybe this world would be a better place

2009-06-03T09:54:00.001-05:00

18 days until we take the flight to Boston; 22 days until surgery…..and I think that says it all for today.

I am going to blog each day for the next 18 days, about my son, our hero. It might be a funny story or a tidbit from our past. It might be a picture of my handsome guy or a look to the future……join me in celebrating Tuckers life with us this far, take him into your hearts…..and remember him in your prayers!!! Enjoy the glimpse and please COMMENT when you feel the urge…..We love you all.!!!

Scrapbook Winner

2009-06-02T12:00:00.004-05:00

Thank you so much for the comment love and well wishes that will be following Tucker to Boston in a few weeks. They mean a lot!

And now, for the winner of the very cool Flip Flop Scrapbook Giveaway!

Dina from 4 Lettre Words!
(Random.org chose #9)

Congrats Dina and thank you so much for your generous donation to Tucker's fund.

Photo Session

2009-05-27T09:43:00.003-05:00

Tucker had his photos taken last weekend by Alisha. You can view them as they become ready over at FLICKR. Enjoy!

Also, don't forget to go and enter our Flip Flop Scrapbook Giveaway!

Flip Flop Scrapbook-Giveaway!

2009-05-21T12:29:00.006-05:00

Tucker's mommy and sister designed these very sweet and trendy scrapbooks made out of flip flops. Are these not the cutest memory savers! You can add photos, keepsakes and journal all about your upcoming Summer vacations and activities.

We are so thankful and grateful for the support and love you have all shared that I have decided to give away one of these fabulous scrapbooks to one lucky winner!!

All you have to do is leave a comment on this post wishing Tucker and his family all the best on their journey to Boston next month. I want them to be leaving with as many well wishes, cards and photos as their hearts (and suit cases) can handle. We are exactly one month away from departure.

If you would like additional chances to win one of these really fabulous scrapbooks, make a donation to Tucker's heart fund via the Paypal button on the right. You can have an extra entry for every $1.00 donation.

Contest runs from now until May 31st.

Showing Tucker LOVE.....

2009-05-20T11:25:00.002-05:00

Light Up Your Life

2009-05-19T11:41:00.005-05:00

Joey from The Weeks Family Blog has come forth and offered an amazing collection of home made candles. A portion of the profits from each sale will go directly toward Tucker and his family.

Candles By Scorpio offers a wide range of fragrances; everything from Almond to Zinfandel. I think the Orange and Lilac would be my top picks. Joey also has many different sizes to choose from. The largest size she offers is a 26 oz. This is the kind of candle I would buy, the long lasting burning time would keep my house smelling yummy for a long time. She also offers smaller candles such as your Tea Lights and Votive's.

Everything you need to know to to put together your order can be found at Candles By Scorpio. Fragrances, Pricing and Sizes as well as photos of her products.

This is a wonderful opportunity to stock up on some of your favorite candle scents and all the while you will be helping Tucker get to Boston. We are down to last few weeks before Tucker leaves. Every last bit we can do to help will make a world of a difference. Joey has volunteered to send a portion of each candle sale to Tucker and his family. Thank you Joey for your kindness!

To place your candle order, please visit Candles By Scorpio. You can contact Joey directly to get your orders in process by emailing her at candlesbyscorpio@aol.com

The Countdown

2009-05-17T15:09:00.002-05:00

The countdown has begun, Tucker is 5 weeks away from his whole heart repair in Boston. Last minute preparations are in the works and flights have been booked.

We are still collecting photos from our followers and friends for the banner that will accompany Tucker to Boston and hang in his room. This is part of our "Show Tucker Love". Please email all photos and messages to karenb526@aol.com. We are also still looking for photos of you wearing the I "Heart" Tucker t-shirts. You can purchase the shirts in several awesome colors.

I cannot thank all of you enough for all of the love and support you have given to this fundraiser. We are still accepting donations via the paypal button to your right.

Finally, Our winner from the Amazon raffle is Andrea. I will be contacting you soon Andrea. Thank you for your donation to Tucker's Journey For A Whole Heart, we appreciate it very much. Congrats on your win!

Down Syndrome Pages

2009-04-30T12:54:00.003-05:00

A huge thanks to Rus for putting together this banner on the website Down Syndrome Pages. Thanks so much for your kindness, it's very much appreciated!

Be sure to stop by and have a glance at all the amazing information!

AND, there is still an Amazon Gift Card just waiting to be given away! Go over and check it out! It's for a wonderful cause, to help Tucker venture to Boston where he will have his heart repaired. Repaired and ready to offer him a full and amazing life!

Showing Tucker LOVE.....

2009-04-29T19:53:00.004-05:00

As I receive more pictures they will be posted as well. You can review them along with messages on the side bar in Flicker.....send your photos to karenb526@aol.com .

Dear Followers....

2009-04-25T16:46:00.003-05:00

Tucker had his tonsil surgery yesterday. We were sent home today with "close" watch. He did really well with the surgery. He is cranking, of course, but doing well. This was the reason for our initial delay of heart surgery in Boston. Tuckers airway was small and being blocked by tonsils that were too big....SO, with this done we can now concentrate on getting everything ready for the Journey to Boston.

It was so hard letting him go, making that walk down the hallway to the operating room. I am so grateful that it went so well. Two months and counting down.....gives us time to be strong and ready for our WHOLE HEART.

Thank again for everything---Tuckers Mommy

Amazon Gift Card, Raffle Number 12

2009-04-23T20:13:00.003-05:00

Everyone loves Amazon right? The goodies you can find on Amazon are plenty. Everything from toys to books.

Andrea from Momma's Review has so very kindly donated a $25 Amazon gift Card to one lucky reader who makes a donation of at least $1.00 to Tucker's fundraiser.

Tucker's surgery is right around the corner. In fact, Tucker will be having surgery tmrw to help get him prepared for the Whole Heart Repair in Boston. Please keep him in your thoughts and prayers tmrw. Additional updates about Tucker tmrw can be found over at their homepage, The Bryant Family News.

Now, who wants to win this gift card?! You can enter as many times as you'd like at just $1.00 per entry. Raffle is open until May 8th and the winner will be announced on May 9th.

Showing Tucker LOVE.....

2009-04-22T11:45:00.007-05:00

Jennifer and Daughter Madeline......

We Have Winners!! (Raffle #11)

2009-04-22T09:30:00.003-05:00

The winner for our Build-A-Bear raffle is Andrea from Momma's Review!! Andrea has been a wonderful inspiration and friend to this fundraiser. You can learn more about her and all her wonderful reviews and giveaways over at her website, Momma's Review.

Beginning tmrw, there will be two new raffles up for grabs. Please stop back over and check them out for your chance to win!

How To "Show Me Love"

2009-04-22T09:02:00.005-05:00

Tucker's surgery is fast approaching. Plans have already been made for pretesting and fly out dates have been arranged. We are overwhelmed by the amount of support and donations that so many of you have given.

Tucker's journey to Boston will be here in a matter of weeks. In preparation for the journey, we are making banners and posters to be hung in his hospital room during his stay. A reminder that there are so many thinking and praying for Tucker and his family.

We are looking for photos of each person who has Tucker in their hearts. Photos that will give Tucker and his family faces to focus on when they need the support. If you have ordered an I "Heart Tucker T-shirt, we'd LOVE to have photos of you wearing them. If you have not been able to purchase a T-shirt, you can still do so here.

Besides wearing the love, we'd like to see photos of our readers showing some kind of love or well wishes. A sign you made perhaps, wishing Tucker the best of luck. We want to make sure Tucker's room overflows with love and support from each and every one of you.

Please send your photos to karenb526@aol.com

Showing Tucker LOVE.....

2009-04-18T10:17:00.004-05:00

You can send me your picture to post at karenb526@aol.com. I am going to print each picture out and make a banner for Tucker's room in Boston. Thank you to EVERYONE for Loving my Tuck Man.

We Have Winners!! (Raffle #10)

2009-04-13T20:44:00.001-05:00

The two winners for the Pumpkin Butter from Fresh Mommy are:

Partymix25 and Navybrat76!!

Congratulations!

All winners have been notified via email. All winners have 48 hours to respond or another number will be generated.

Thank you all so very much for your love, support, well wishes, good vibes, prayers and donations! We appreciate it very much!

Little change in Dates........

2009-04-02T15:45:00.000-05:00

Hello Everyone,

This is Tucker’s mom, Karen. I wanted to update everyone on a few things. First thing is Tucker will not be having his surgery next week due to illness. Tuck has a few things going on, not just his heart condition. The major thing right now is his airway. With Down syndrome come floppy joints, muscles, and small airways. Tucker has always had oxygen levels around 70, a “typical” person runs 100 percent. When he is sick, when he was sick on the 10th of March, his oxygen was 57...not good. This in turn delayed our tonsil surgery, which in turn delayed our heart surgery. Dr Del Nido, the surgeon in Boston doing the heart repair, wants and feels very strongly that Tucker’s airway issues need to be resolved before he can do cardiac surgery. IF we do not do the airway first then recovery could prove to be difficult.

Our Tuck man is a complex fellow. He has had several surgeries before this one and we have learned that Tucker does things on his time schedule, whether I like it or not. So, we are scheduled to go to tonsil/adenoid and tube in ears on April 24th, which will be an overnight stay. We will then be going to Boston June 21st. The #1 Cardiac Pediatric surgeon in the USA was booked in May—imagine that. We will gladly wait for our whole heart. Tucker is stable and actually we have a cardiology appointment next Wednesday to have an EKG and Echo done to check valves and all that good stuff. We will have that done here in KC by our regular cardiologist.

I want to also say THANK YOU to everyone who has taken Tucker into your hearts and your homes; those who have passed this site along; who have donated to our journey, whether it was in the form of monies or in the form of prayer. We absolutely know prayer works and the more people praying for Tucker the better. We are deeply touched by everyone’s generosity.

Who's Going To Arizona? The Winner!

2009-03-30T20:10:00.005-05:00

I do apologize for the delay in announcing the winner, but alas, I have one! Thank you to the wonderful individuals who donated to Tucker's Whole Heart, I appreciate it very much. My gratitude goes out to each and every individual who helped make this possible.

Okay, are you ready for the results?

Darlene H. you are the winner of a 7 Day/7 Night stay in this fabulous villa in Arizona!

Congratulations!!

Darlene, I am going to email you in just a moment, please be on the look out for that email and get back to be as soon as possible. You have 48 hours to claim this win or I will have random.org pick me a new winner. Thank you!!

Thanks again everyone, for your support. Now scroll down and check out the newest raffles!

Build A Bear Cub Cash , Raffle Number 11

2009-03-28T17:05:00.001-05:00

Who doesn't love Build-A-Bear! I've given so many of these wonderful animals away and children go crazy over their cute and cuddly designs. Right now, they have a precious bunny just waiting to stow away in a little one's Easter Basket.

Or how about a vibrantly colored, Happy Go Lucky Frog! There are animals for everyone and the accessories to match.

Build-A-Bear has been so kind and donated $10.00 in Cub Cash to be raffled off here for Tucker's journey to Boston. You can use the Cub Cash at any Build-A-Bear Workshop location.

Please leave a comment with your NAME, DONATION AMOUNT, and EMAIL.

Remember, every $1.00 you donate to Tucker's Whole Heart Fund get's your name in the drawing.

This raffle will run until midnight on April 18th and the winner will be announced April 19th.

Fresh Pumpkin Butter, Raffle Number 10

2009-03-28T16:52:00.004-05:00

Fall has come and gone but Fresh Mommy still has a few jars of her Pumpkin Butter available to raffle off. Tabitha, an amazing photographer who blogs about her wonderful family, has generously donated 2 jars of this yummy bread spread.

Take a moment to go over and check out Fresh Mommy, her photos will make you drool with delight!

Then come back over and enter to win one of these fabulous jars of Pumpkin Butter. Please leave a comment with your NAME, DONATION AMOUNT, and EMAIL.

Remember, every $1.00 you donate to Tucker's Whole Heart Fund get's your name in the drawing.

This raffle will run until midnight on April 12th and TWO winners will be announced April 13th.

Wear The Love

2009-03-27T12:45:00.005-05:00

I've been a little slow the past few weeks about getting items up for the raffle but there are several amazing items coming up in the next 2 days!! Please be sure to come back and check them out!

I also want to take a moment to introduce these great new t-shirts that have been designed in honor of Tucker. You can purchase your very own shirt for $10.00 by visiting GodisLoveTshirts.com

A portion of the proceeds from every shirt is being donated directly to Tucker's Whole Heart Fund.

Also, as a reminder, our raffle for a 7 day/7 night stay in an Arizona Villa ends tonight at midnight. Each entry is $50.00 and you can enter as many times as you'd like!

VILLA RAFFLE ENDS TODAY....midnight

2009-03-27T09:40:00.001-05:00

$50.00 donation gets your name in the drawing.
See below for all the details.

BAKE SALE

2009-03-24T10:50:00.002-05:00

We are having a fundraising BAKE SALE, this Saturday the 28th of March. It will be at Good Shepherd United Methodist Church at 9555 N Oak Twy, Kansas City Missouri. If you are out and about and in KC, come see us. We will be having a raffle, for every donation or baked good bought your name goes in for some Panara Bread gift certificates. I will take pictures and post them after the event. Mr Tuck man might even make an appearance, depending on the weather.

Thank you everyone who has contributed to our journey…..it is amazing to me the support we have received. I am indeed grateful to ALL of you!!!!!

We Have Winners!! (Raffles 7,8 and 9)

2009-03-15T10:05:00.003-05:00

The following winners were chosen for raffles 7, 8 and 9 that were closed March 14th, 2009. All winners were chosen via random.org.

Winner of the Recession Owl
#16, Johanna

Winner of the Signing Time DVD
#5, Megan

Winner of the Safety Necklace
#1, military76brat

All winners have been notified via email. All winners have 48 hours to respond or another number will be generated.

Thank you all so very much for your love, support, well wishes, good vibes, prayers and donations! We appreciate it very much!

Villa Raffle Exstension, Hurry!

2009-03-09T12:20:00.003-05:00

We have decided to extend our Villa Raffle until the 27th of March. This will give our readers more time to access their calenders and find a great date to book their 7 days and 7 nights in Arizona!

Not only that, but we have lowered the donation amount for each entry to $50.00! That's right, for just $50.00 you can have your name entered in the raffle for a chance to win a 7 day/7 night stay at the Villa in Arizona. This Villa normally rents for $1200.00 a week.

*For those of you who have entered with your $100 donation, you will now have your name entered twice.

So take a moment and read about this wonderful opportunity! It's a beautiful house!

***********
Reposted From Original

Today I was contacted by a very sweet individual who offered his Villa in Tucson up for a raffle. This is an amazing opportunity for any individual. Arizona is a beautiful place to visit. My family ventures there at least once a year to visit our parents. We love it!

Please read the information below carefully so you know what is being offered and how to enter.

Our super sweet individual is offering the following:

7 Days and 7 Nights at his Tucson, Arizona Villa
*Your booking must be before December 31st, 2009

Every amenity you can imagine is offered and the view itself is remarkable.

From the site,

"Private Pool Mountain View home in Oro Valley, AZ. This one floor 3-bedroom ranch will capture your imagination. The newly installed pool and natural waterfall will bring tranquility to the mountain views. This executive style furnished home is located on an acre of the quiet Catalina Mountain range. One of many hiking trailheads is close by as well as golf, tennis and horse back riding. A pleasant courtyard embraces you as you arrive from the seldom-traveled cul-de-sac of Ridge View Place in Oro Valley AZ,a suburb Northwest of Tucson. Specially designed self-cleaning pebbeltech pool is built to interact with the surrounding landscape and environment. Full access to DSL internet and all channel Direct TV Satellite with a 60" HD TV await your visit, enjoy the wood burning fireplace on those chilly evenings or use our high resolution telescope to view the nightly wonders of the Arizona skies. Truly a home away from home awaits you when you plan a visit to our Private Pool Mountain View home. Snowbirds welcome. Airport: Tucson International Distance: 25"

You may view more information about this 2300 sq ft Villa by visiting the home's site.

This would be a great opportunity for a couple to get away or a family vacation you've been meaning to take.
*Please go here to check date availability!

A whole week's stay, for your donation to Tucker. How can you resist such a fabulous offer!! These days, you cannot even stay in a decent hotel for $100 a night.

Here's how to enter:

1. Check the availability of the dates you wish to use the Villa should you win the raffle.
2. Make your donation via the Paypal button on the right. EACH Entry is a minimum of $50.00. You may enter as many times as you'd like.
3. Leave a comment on this post stating your name, your email addy, your donation and the dates you would like.
4. Raffle entries will be accepted until midnight central, March 27th, 2009. Winner will be randomly drawn and announced March 29th!

Should you have ANY questions regarding this raffle, please contact me.

Good Luck and thank you for all of the wonderful support you have given this family.

*Please note the winner will be responsible for airfare, transportation, food, beverage and any other personal needs. This raffle is for the use of the Villa only.

We Have Winners!! (Raffles 4 and 5)

2009-03-07T21:30:00.003-06:00

The following winners were chosen for raffles 4 and 5 that were closed March 6th, 2009. All winners were chosen via random.org.

Handmade Purse by Tucker's Grandmother
Winner, Andrea from mommasreview.com

Disney Cherries Purse
Winner #14, Mommy To Hailee

All winners will be notified via email in the next hour. All winners have 48 hours to respond or another number will be generated.

Thank you all so very much for your love, support, well wishes, good vibes, prayers and donations! We appreciate it very much!

**********
P.S Don't forget we have 3 raffles that will end on March 14th. Hurry over and enter to win one of these great goodies!

Recession Owl
Signing Time DVD
Safety Necklace

Recession Owl, Raffle Number 9

2009-03-01T03:02:00.001-06:00

I am so pleased to announce our item for raffle number nine! Mike Adamick, daddy blogger over at Cry It Out, has so generously donated a one of a kind Recession Owl. Hand Made my Mike, these little pillows are the stuffed animal your little one is going to love!

These are the cutest and most unique little pillows you will ever own.

Mike is a very talented individual (and quite famous if you ask me) and Daddy to Emmeline. You must pop over and see what lengths this Daddy goes to for his daughter. My favorite story thus far, is "Oh what a love-a-ly mawning"! The adventures Mike and Emmeline take together are fabulous and very entertaining to read but this story was so fun. It made me wish I was a little girl again!

So hop on over and visit Cry It Out for a moment, say hi and then come back here and enter to win this beauty!

(Thank You Mike for donating such a lovely piece of work!)

Each entry cost $1.00. Please make your donation via the Paypal button over there on the right. You may enter as many times as you would like!

After you have made your donation, please come back to this post and leave a comment stating that you made a donation and your email addy.

Thank you so very much for all of your support and Good Luck!

Contest will run from March 1st thru March 14th at midnight. Winner will be chosen via random.org and announced March 15th.

Signing Time DVD, Raffle Number 8

2009-03-01T03:01:00.001-06:00

Rachel, at Signing Time, was so very kind to donate Tucker's favorite signing video; Leah's Farm.

Tucker likes anything to do with a farm. Heck, even his bedroom is a farm theme. The songs in this video are the best. Tucker tries to dance like Alex in Turtle Rock.

Tucker has learned so much of his communication through the Signing Time series of DVD's. Even the big kids like to sit and sign along. Rachel, Alex and Leah put learning sign into a simple and fun way. IF you don't have this one....you will want it. Learn: frog, horse, cow, turkey, sheep, snake, turtle, and much more.

For more information about Singing Times or to view more of their fantastic products, visit www.signingtime.com

Each entry cost $1.00. Please make your donation via the Paypal button over there on the right. You may enter as many times as you would like!

After you have made your donation, please come back to this post and leave a comment stating that you made a donation and your email addy.

Thank you so very much for all of your support and Good Luck!

Contest will run from March 1st thru March 14th at midnight. Winner will be chosen via random.org and announced March 15th.

Safety Neckalce, Raffle Number 7

2009-03-01T03:00:00.001-06:00

Our seventh item up for raffle is a custom made ID Necklace from none other than the Special K's mommy, Renee!

Renee is a sweet and lovely mother of 4 (soon to be five) children and the author of Life With My Special K's. She created these necklaces as a way to keep identification on children and alert individuals to special information. Renee also created these necklaces as a way to raise money to bring their daughter home from Eastern Europe.

It was designed for safety, first and foremost. It has a full name, an address and a cell phone number so should the child ever be separated from the parent, they can be contacted. And then of course, they have to look cute! Hence the fun colors!!!

"These make GREAT gifts for that special child in your life and provide parents with a feeling of safety should a little one disappear." -Renee

(Thank You Renee)

This is such a wonderful item to have! These ID necklaces can also be used to alert someone to a specific medical condition your child has such as diabetes or allergies. Renee makes them so colorful and fun for children to wear.

Renee is offering one lucky winner a custom made ID necklace!! You choose the colors and information you would like.

Each entry cost $1.00. Please make your donation via the Paypal button over there on the right. You may enter as many times as you would like!

After you have made your donation, please come back to this post and leave a comment stating that you made a donation and your email addy.

Thank you so very much for all of your support and Good Luck!

Contest will run from March 1st thru March 14th at midnight. Winner will be chosen via random.org and announced March 15th.

*You may also skip over to meet Kellsey! Should you find yourself donating to Renee's fund raiser as well, you may have one additional entry into this raffle. Please leave a separate comment letting me know that you have donated to help bring Kellsey home.

We Have Winners!! (Raffles 1-3)

2009-03-01T01:38:00.003-06:00

The following winners were chosen for the first three raffles that were closed February 28th, 2009. All winners were chosen via random.org.

Child's Custom Canvas 31 Entries
Winner is # 11 (Lori)

FHI Flat Iron 110 Entries
Winner is # 88 (Sky)

Kool Aid Bag 13 Entries
Winner is # 8 (Heather)

All winners will be notified via email in the next hour. All winners have 48 hours to respond or another number will be generated.

Thank you all so very much for your love, support, well wishes, good vibes, prayers and donations! We appreciate it very much!

Raffle Winners, Coming Soon!

2009-02-27T06:00:00.000-06:00

The first round of our raffles is quickly coming to an end. Have you had a chance to donate and enter your name for a chance to win?

The following raffles will close at midnight on February 28th. Winners will be announced on March 1st, 2009

Win a Child's Custom Canvas

Win an FHI Flat Iron

Win a Kool Aid Bag

*If you have made a donation to Tucker's Whole Heart fund and wish to be entered for a chance to win any of our raffles, please make sure you have left a comment under the correct post.

From the bottom of my heart......

2009-02-23T13:25:00.002-06:00

Thank you everyone for your donations. We are so blessed to have such great people surround us, support us and pray for us. Tucker will be able to be surrounded by his family while he has his surgery and I have you to thank. You just don’t know how much it means to have the flights covered thus far and out of the way.

There are several people that continue to donate even after an initial donation and I am just speechless at the kindness. The only way I know to repay you is to bring this special little boy home, with a whole heart!! (man that sounds so good)

Thank you from the bottom of my heart.

A Vacation Villa, Raffle Number 6

2009-02-19T11:06:00.009-06:00

7 Days and 7 Nights at his Tucson, Arizona Villa
*Your booking must be before December 31st, 2009

Every amenity you can imagine is offered and the view itself is remarkable.

From the site,

You may view more information about this 2300 sq ft Villa by visiting the home's site.

This would be a great opportunity for a couple to get away or a family vacation you've been meaning to take.
*Please go here to check date availability!

A whole week's stay, for your donation to Tucker. How can you resist such a fabulous offer!! These days, you cannot even stay in a decent hotel for $100 a night.

Here's how to enter:

1. Check the availability of the dates you wish to use the Villa should you win the raffle.
2. Make your donation via the Paypal button on the right. EACH Entry is a minimum of $100.00. You may enter as many times as you'd like.
3. Leave a comment on this post stating your name, your email addy, your donation and the dates you would like.
4. Raffle entries will be accepted until midnight central, March 27th, 2009. Winner will be randomly drawn and announced March 29th!

Should you have ANY questions regarding this raffle, please contact me.

Good Luck and thank you for all of the wonderful support you have given this family.

*Please note the winner will be responsible for airfare, transportation, food, beverage and any other personal needs. This raffle is for the use of the Villa only.

Contact Information

2009-02-18T18:08:00.003-06:00

I've had to re-route some things today. lol! If you, or someone you know, wants to be a part of this fundraiser in any way, shape or form, Please contact me. I will be the sole contact for this mission from this day forward.

You can find my email link on the top right hand corner.

Thank you so much for your support!!

Disney Cherries Purse, Raffle Number 5

2009-02-18T08:05:00.007-06:00

Disney Cherries Purse

Raffle Number 5, a purse covered in Cherries from Disney. Very cute and just the right shades for Spring!

You may enter this raffle as many times as you'd like. Each entry cost $1.00 and can me made via the donate button to the right.

Leave a comment notifying us that you have made your donation.

Good Luck and Thank You for your support!

Wordless Wednesday/SEW

2009-02-17T19:40:00.003-06:00

Handmade Purse, Raffle Number 4

2009-02-17T17:59:00.007-06:00

Purse Handmade By Tucker's Grandmother

This very sweet, stylish purse was handmade by Tucker's Grandmother. This is item number four up for raffle.

You may enter this raffle as many times as you'd like. Each entry cost $1.00 and can me made via the donate button to the right.

Leave a comment notifying us that you have made your donation.

Good Luck and Thank You for your support!

My Thanks, To You!

2009-02-16T07:58:00.005-06:00

Wow, look at all of the wonderful people out there willing to step in and help Tucker and his family! We cannot thank you enough for everything.

Thanks to those grabbing our button and adding it to your blog for awhile! It's such a cute button and it really does look great anywhere.

Thanks to those of you taking a moment out of your regular posting schedule and writing something special about Tucker and this fund raising page. Word of mouth is a great tool! We've seen what can happen when bloggers spread the word.

Thank you to the many who have made donations to Tucker's journey. We all know how tough times are right now. Every.Single.Penny means a lot.

Tucker's Surgery Is Scheduled For April 13th, 2009

$265.00 Raised

Don't forget to enter some of our current raffles going on too. Each dollar donation will get you one entry into the raffle of your choice. Don't worry, there are lots more raffles coming this way.

Kool Aid Bag
Flat Iron
Custom Child's Canvas

And finally, thank you for your thoughts, prayers and good vibes. Those alone have made so much possible. It's those actions that get us through one day and on to the next. *hugs*

-Alisha

Congential Heart Defect Awareness.....

2009-02-15T09:53:00.002-06:00

Somewhere…someplace… today…A family is waiting to hear…Is something wrong with their baby?The answers aren’t quite clear…This family has entered an unwanted world…And they just don’t know what to expect…Somewhere…someplace… today They first heard the words: heart defect. And how they hoped this was not true…And thought… this cannot be…I too… know just how this feels…For one day…this was me.

Somewhere…someplace…today…A man and a woman embrace…Their baby is in surgery…They long to see her face…They haven’t got to hold her yet…Without…a cord or line…They pace the room awaiting news…And hope she’ll be just fine.Prayers fill this busy waiting room…And mom and dad are scared…Somewhere…someplace..today…The tiniest hearts are repaired.

Somewhere…someplace…today…A child’s growing fast…Smiling,laughing,thriving…His mom thinks…can this last?It’s almost easy…to forget…That anything is wrong…Somewhere…someplace..today…Her child seems so strong.

Somewhere…someplace.. today…A little boy fights…just to live..A father holds his tiny hand…His love…all he can give…The doctor’s are all baffled…They fear that he might die…Somewhere…someplace…today…A family says goodbye…

Somewhere…someplace…each year..More than 40,000 families will see…What it means…when something’s wrong…They’ll face a CHD. Today…for just a moment…Stop…remember…reflect…Make time to tell someone you know…“I’ve been changed by a heart defect”.

Author - Stephanie Husted

Kool Aid Bag, Raffle Number 3

2009-02-14T00:02:00.005-06:00

Handmade by no other than the Tuck Man's Mommie!! Why not own this one of a kind tote bag/purse!! Perfect for lunch's or school bok's and maybe even the kitchen sink!

Just like before Every $ is a entry into the raffle!!

FHI Flat Iron, Raffle Number 2

2009-02-13T17:34:00.004-06:00

Need straight hair? We have a pink Heat Technique G2 Professional Ceramic Hair Iron 3/4" by FHI, you can read about it here Flat Iron !!

Same process amount of donation will be the entries you have into the raffle! Donate and come back here and tell us your Name so we can verify the entries!!

Airline ticket's

2009-02-13T17:19:00.003-06:00

Do you have any frequent flier miles laying around? Jennifer and her husband Steve at Rundpinne did, they had enough to buy one ticket on united to help the family out! She will never know how much this means to me or even to the Bryant family! So if your not using them why not donate them!! it will add up!!

Child's Custom Canvas, Raffle Number 1

2009-02-13T16:13:00.008-06:00

Ashley Tumlison from http://www.simplyash.etsy.com/ has donated a 12 x 16 child's custom canvas! Below are some examples of her work. They normally sell for $35.oo

How the raffle will work. If you donate to paypal $5.00 you will get 5 entries into the raffle, If you donate $1.00 you will get one entry into the raffle. Once you donate for the raffle please come back here and post that you did. But please tell us your first name that it was donated under. We will find out the winner of the first raffle on 03/01/09!

What can you do?

2009-02-12T19:29:00.006-06:00

I am doing my part to help them. I asking for donations of new item's that we can raffle off. If you work at a company that has merchandise and are willing to donate it for a raffle please contact Alisha or myself

Email's have been sent out to almost every hotel and hotel chain in the Boston area, to see if we can get a week here or a week there! Of course I am offering advertising to that such hotel company on my blog and this one.

Joanna at Southern Girl Designs created the lovely blog for us. And it is all Tuck man! He loves farm's and barn's. And she is donating 10% of every sale to the Tuck Man, so do you need a blog makeover? Here is another way you can help!

I am talking with a major corporation to donate dollar for dollar what we raise! So next time you go for that frapachino at Starbucks, why not hit the paypal button up there instead! The Tuck Man needs his family around him as he goes through this experience! $5 $10 $20 no amount is too small and everything helps.

Thank you for your time
Lori @ The Downs Gang