A breath of fresh air

This post is a little bit late. Sorry for keeping any of you in suspense. Truman was able to get off the respirator yesterday... Finally! It was a major "hurry up and wait" task. I was up at the hospital at 10 am and kept getting told that it would happen at any time. Well, it finally did at 5pm. It was a very long day, but well worth the wait. I was a little dissapointed that I didn't hear him cry after, not that he wasn't trying, but his throat was a bit sore and he will be quite hoarse for a few days. Even though it is progress, it does take a toll on his little body. Luckily for us we were finally able to hold him again which is good medicine for all of us.

~Kaiti

There's always tomorrow

Once again we got the word from the doc's that Truman may be able to come off the respirator tomorrow. We are really hoping that this one takes. Truman is doing well today, however, despite his parent's angst. He was wide awake this afternoon, squirming around and giving us his patented scowl. We love it when he does that. You can tell that he is tired of the breathing tube, but he is being very patient and showing the doctors and nurses that he can do a good job breathing on his own. Truman passed his spontaneous trial today, which is a test to see how well he will do when the respirator is turned off completely. He did fine. They are planning on doing another test tonight and tomorrow morning and if all goes well there shouldn't be any reason why he can't get that darn tube out. It will be so nice to see his little smile again.
Truman has also progressed to his feeding goal of 16 cc's per hour (about 1/2 ounce per hour). And he is pooping and peeing fantastically. He really has come along way since his surgery one week ago. Man, it feels like it's been months. I really do think this place ages you. I am so appreciative of the care he is getting here, but I will not miss this place one bit.

Thanks to everyone again for the love and prayers!

Nurses in Training

Truman is now 3 weeks old. Time goes by in a blurr. No really it is pretty much a blurr - the days blend together, you can't really see straight sometimes due to lack of sleep or tears in your eyes, but time waits for no one.

We were a little disappointed that they couldn't take the breathing tube out yesterday, but they are lowering the settings to help Truman remember to breathe on his own. It is a fine balance because the pain medication he is on suppresses the drive to breathe. He did come off one of his blood pressure medications because his blood pressure dropped too low, we will see if he has to go back on it. 

He really is remarkable how well he puts up with everything and the nurses all love him. they were explaining to us that he may be on some medications when we get to take him home and they will show us how to give those if he needs them. We were kind of overwhelmed by all the things they said we may or may not have to do when he gets home. As far as when he gets to come home they still haven't given us a time frame. It is more just when he gets off some of the stuff he needs right now and passes some tests. A few of the things they said we will need to know are - Child CPR and Choking Rescues, administering oral medication, possibly - administering injection medication (like an insulin type shot), possibly putting in a feeding tube. Hopefully we won't have to be trained on all those things. When they tell you all this stuff at once it is daunting to say the least, but when you think about it they will train you on it over days - hopefully not all at once.

So he is just recovering well. Day by day his swelling goes down and he looks more like himself and he is up to 9 cc's of milk an hour. Hopefully today they can take out his last chest drain and get him off the respirator.

Totally Tubular Dude!

Truman continues to progress on the road to recovery. When we visited him to day he was awake the whole time. We kept telling him to go to sleep, but like most kids his age he wouldn't listen. The doctors were able to take two of his drainage tubes out of his chest today. The ones that sat on each side of his lungs. So that is two less tubes to worry about. They also removed his catheter and he is going through diapers like a mad man. Hopefully tomorrow they will be able to remove that pesky ventilator. Truman looks like he is fed up with it. He is moving around well, which they like to see and is starting to rely less on the ventilator to breathe.

If you ever wondered if you could cry while on a ventilator you can. You just don't make any sound. It is really not easy to watch him cry while he has that down his throat, but we are very hopeful he won't have to deal with the breathing tube much longer.

He just watched us a lot and I think he was glad to see us. Thanks for everyone's thoughts, prayers and comments. We love to read the comments.

Once he gets that ventilator off, we should be able to put up some more pictures.

Case Closed, Got Milk?

What day is it now? This whole thing is really starting to blur together.

The doctors were able to close Truman's chest yesterday which made us feel so much better. He now just has a small dressing on the front of his chest. Since then he has just been doing great. I am sure he is donig better than we are most of the time. It is really hard to see the little guy with so many IV's and the ventilator doing the breathing. Truman is still pretty puffy in the face and abodomen so he doesn't quite look like himself again yet, but he is still cute. I think I counted the other day that he had 11 IV machines giving him various drugs and nutrition. One of them now is Milk. YAY! They have started his feeding and they always start out really slow just to make sure everything is working the way it should and you don't get any pluggage. This is all done through a feeding tube that goes through his stomach and right into his small intestine. This prevents any spit up which you wouldn't want to do while on a ventilator. He started at 1cc an hour which is a drop, but has now gone up to 2 cc. Mmmm, milk.

He opens his eyes everynow and then, but mostly just rolls them around. His pain medication I am sure has him very far on the loopy side. If it were up to Kaiti and me, he would just sleep until he was all better. We certainly don't want him to be uncomfortable or have any pain. I have no idea how the nurses know if he is in pain or not. I guess they can tell some by the heart rate and blood pressure. Another nurse said their pupils tell you some too. It just wrenches your heart to think about it so we really try not too.

The doctors are all very positive about his recovery and so are we. We are so excited when anything can come off because he is doing better. So get going ventilator.

these pictures are Pre-Surgery

After much anticipation Truman's surgery day came. They kept giving us general information like "it will be sometime between Thursday and Tuesday" then it became maybe Tuesday or Wednesday. After that they told us ... well it looks like it will probably be Thursday. Then all the sudden Kaiti went up to visit Truman on Tuesday and there were lots of Doctors and medical staff around Truman's bed. Finally a concrete answer. His surgery is going to be Wednesday. The Surgeon - Dr. Burch came and talked with us and gave us the low down on what exactly was going to need to happen. It is a lot of details and if anyone wants the full story just ask Marc. And that was Tuesday.

Then Wednesday came bright and early. We headed up to the hospital with a lot of anxiety and excitement because we knew that this was the step to allow Truman to get better. (and be able to eat sometime) They wheeled Truman downstairs at about 7:45 and the anesthesiologist came
and talked with us. We saw Truman off to the OR and went and waited. And waited. ..... And waited. They were kind enough to give us updates about every hour - like ... Everything is going good, the surgery just started. ... you will probably be able to see him in about 2 hours. Lots of little blips of info.

The Surgery:

So after the surgery Dr. Burch came and told us how it went. He said his numbers were great and the surgery went well, but not as perfectly as he would have liked. Since they had to go into the front they fixed both of Truman's defects at the same time. The reconstruct of the Aorta went great. His Aorta is a litte bit small for his size, but it should be just great. The problem they ran into was when they were fixing the hole between his two lower chambers. The Doctor had felt that there was enough tissue in there to close the hole using that because it is faster and Truman wouldn't need to be on the By-Pass machine as long (which makes them puff up from gaining liquids. The By-pass machine basically works as artificial lungs and heart and takes about a liter to prime. Babies have about 0.4 liters of fluid in their whole body. So they tend to absorb a bunch of fluid from the machine, but it does make the surgery possible.) as if they had to use a patch. Well after they checked the fix to see if it leaked, it did leak more than they wanted. So they put little Truman back on the By-pass and went in and added a patch. the patch is about the size of a teardrop shaped pea. Truman's little heart is about the size of a good size strawberry, so the hole wasn't a teeny pin prick. So the second time on the By-Pass machine puffed Truman up some more and the doctors didn't feel safe closing up his chest just yet. The surgery was a success.

So Truman is recovering in the PICU - It is a lot bigger, brighter and more busy than the NICU. His chest currently has a patch sewen across it so that there isn't any extra pressure on the heart. The nurse said it was clear and you could actually see his little heart beat inside of it, but there are lots of sterile dressings on top of it to keep is safe. about 4" worth. They said today that he is doing great! His blood pressure and heart rate are great, they turned down the respirator 1 setting and it looks like they will be able to close his chest tomorrow, which was originally going to be Saturday. It is still a long road ahead, but it is progressing and we can't wait to see all the tubes come off as He gets better.

We are so greatful for the love and caring of friends and family. We can feel your prayers and hope that they continue. As Danny said on friendnew.net "GO TRUMAN!"