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:
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
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
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, 06/25/2009I know I said no more updates, but I couldn't resist.
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.
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