A new week begins again – time simply flies by. Mom and I went in to see Brendan this morning and when we got there, he was looking great. He seemed to be pretty calm and comfortable, but his numbers said otherwise. His heart rate was very high, and his breathing was a bit more labored with bouts of rapid breathing.
During rounds, the doctors had a very long conversation about what his troubles might be now, and I have to say my head was well flooded with information I hoped to be able to remember.
By the end, they had settled on a few things. The increase in Lasix had really helped him shed fluids and his chest xray showed that his lungs were looking much better. But the increase really dried him out and left him a bit dehydrated and off balance. They decided to change his fluid balance and to give him some more blood. As soon as they started the transfusion, his numbers already started to improve.
The other problem was that his kidney monitor showed low O2 perfusion. This is also related to the problem above, but they tweaked his air settings as well.
The doctors feel like he is dealing with some withdrawal issues from the opiate medications he has had so much of. His agitation levels are very high and he has built a bit of a tolerance to the drugs already. They are increasing his methadone and trying to get him more comfortable. He is continuing to eat, but they are going to stop increasing the food for now until he stabilizes.
The atrial line did not come out, until he is able to get off of the TPN/Lipids nutrition and eat only breastmilk, it will most likely stay.
I talked to his cardiologist as well, and they filled my head with all the possibilities for his future surgeries. They are shooting for his first open heart procedure – the Glen – for when he is 4-6 months old. But then the PA band he has is a fixed size, so as he grows, it will be tightening and reducing flow to his lungs. So if he grows quickly and this restriction causes a problem, then the surgery could be at 3 months old instead.
He also mentioned the possibility of another procedure to increase the hole between the left and right atriums of his heart to allow better equalization. Right now they are just watching him closely and future echos will determine if this is necessary.
The only other news was that they will consider keeping his ostomy until after his first heart surgery. They don’t want his body wasting energy to heal from another operation if his heart is the priority for the near future.

I am sure I am forgetting to mention at least twenty things. It was a long day. Both Mom and I got a chance to sit and hold him and he definitely responds to the human contact well.

Probably the best picture of Brendan I have been able to take so far. He really looked cute today and was making lots of adorable little faces.

He calmed down some in my arms, but I think the transfusion was really helping.

Trevor had a decent day. He is still fighting some issues with gas, but he is handling it really well. Yesterday, I decided to upgrade his bottles to a fancy expensive one that has the contraption that is supposed to help the baby swallow less air. On the recommendation of one of his PT’s, I bought three of the Dr. Brown Natural Flow bottles. I am pretty seriously unhappy with these things. Not only did Trevor have trouble getting the milk to flow with the nipples that they came with, the bottle leaks everywhere. It is a secret hidden leak, I couldn’t find where it was coming from, but Trevor’s whole chest was soaked before I even realized what was happening. Looking at customer reviews, seems like I am not the only one that has had that problem. What a waste of money!
Trevor gets to see his pediatrician again tomorrow for his 1 month checkup, so we will talk all about gas and bottles and poop.

Bill’s dad was able to come and join us for dinner tonight so he got to meet Trevor for the first time! Here’s the three generations! We hope Brendan can join the photo soon.