Thursday, June 25, 2009

Tucker's Surgery Updates, Day 2

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.

If you missed the play by play updates from today, start a couple of posts down. Here.

6 comments:

Alicia W. said...

Still praying for that sweet boy.

4 Lettre Words said...

So thankful that things are going well. We'll be praying!

Greg said...

Yayyy!!

Muthering Heights and Other Senseless Sensibility said...

I'm glad that he's recovering well!

Sara Bonds said...

Thank goodness things went well. I will be praying that things continue to go well.

lisaschaos said...

Poor little guy has gone through so much! Glad he's doing better. :)