Update 23

A Backward Step

Thaddeus is still doing well overall, but he has taken a backward step. His eating has slowed down significantly, to the point where earlier today they put an IV back in to give him fluids to make sure he doesn't get dehydrated. He has a very small shunt that allows blood to go to his lungs. If he gets too dehydrated it makes it more likely that his shunt could get clogged. This obviously would be a huge deal. This also delays our hope of getting home. He is also still on a low oxygen flow, but the doctors are less concerned with that. They feel that this is something he will grow out of eventually, and they have no problem sending us home with oxygen if it comes to that. The guess is that due to his damaged vocal chord nerve, he is getting a small amount of fluid in the lungs. This fluid is causing his breathing to be less efficient. Over time, as the right vocal chord starts to compensate, and the lungs grow into greater capacity, they think he will be fine without the oxygen flow.

While we are disappointed to see Thaddeus move backwards, we are trying to keep in mind that he is doing extremely well and has moved very fast to get to this point. His cry is getting louder, he is feisty and moves around well. He doesn't favor his chest near the incision. (Apparently some babies after surgery don't want to bring their arms back in front of their chest. He has no problem with that.) His sucking on the bottle is very good, we just can't get the volume in him. He also has been extremely good natured so far. He will lie awake and just look around for some time. We have been told that many of the babies who have this surgery done, don't even get to go home at all until after the second surgery several months later. This is especially true when they have this condition on the other side of the heart. So we keep reminding ourselves that even with this delay he is way ahead of even the more optimistic predictions we were given. We still do not know when he will come home, but since we have passed our 24 hour test and our infant CPR test, and Thaddeus has passed his car seat test, as far as we know we are only waiting on his eating to stabilize. This could of course still take weeks or something else could come up, but as of right now we are feeling optimistic about him coming home sooner rather than later. This is of course assuming we can get him away from his girlfriends, I mean nurses. Until then, we will keep doing the back and forth thing until God, in his infinte wisdom, decides Thaddeus is ready to come home.



P.S. After typing this Sunday night, I did find out that he somehow managed to gain some weight and was up on his weight Monday morrning. Let's see if he can keep that up! 

 

23 B: P.P.S.I have just been informed that the doctors have decided to reinsert Thaddeus's feeding tube. Apparently they don't think he is ready to be on his own after all.

23 C: So what I am being told now is that the doctors have decided they pushed Thaddeus too much too quickly. They want to step back and let him recoup and then move him forward at a more gradual pace. He tried his best but trying to keep up with the pace that was set for him was just too exhasting. Dede is glad they are letting him take it at his speed. I can't help but feel disapointed, but I suppose it is a dad thing to want to see your kid fight it out and prove how tough he is. 

However, I did sign two waivers that stated that I acknowleged that medicine is not an exact science. I guess this is what they mean.
 

23 D: The child is only a month old and I already can't keep up with him. Once the decision was made to put the feeding tube back in, Thaddeus had several very good feeds and a few decent ones, all of which were above the minimum and quite near goal. As such, they have decied to hold off on the feeding tube and see how he does with it all. He should be sedated and heading down to have an echo done on his heart as I type. We will see how his heart and especially the shunt, are doing.