Friday, July 17, 2009

Praying For Poop and Holding Time

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 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 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!!!!

Thursday, July 16, 2009

Updates, July 13th-16th

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.



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 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 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 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 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 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....

Sunday, July 12, 2009

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

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 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 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)