Back to school.....

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!!!!!!!!!!!!!

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

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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!

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