Wednesday, 3/9

Today was a much better day. Actually I don't think yesterday was as bad as it seemed but things got a bit complicated. He was having an "off" day for sure but the nurse who had him yesterday had never seen him have one. So I think she was overly concerned and spread that concern throughout the unit so it was getting back to me. It's a small unit so word travels fast. Martin and I met with the doctor this morning and while there are definitely concerns, they are no greater or smaller than they had been.

So today Dinky was pretty much just hanging out. That's our goal right now, to get him stable on the vent and eating a lot! They started him back on continuous feedings through his g-tube (gastrostomy tube that goes directly into his stomach) so he's getting quite a bit.

We did find out that the diaphragm is likely not working correctly because the nerve was snipped or damaged during surgery. It can potentially regenerate within 2 months however this seems a little unlikely. The more likely possibility is that when he goes in for his next surgery they can do some repair work so that his diaphragm will not impede his lung functioning as it is now. The only good part of this is now we know that this is likely what is causing his lungs to be so dysfunctional. Had this not happened we'd probably be in a much better position but at least we know it's not just because his lungs are that sick.

We are still working on the swelling issue. The latest hypothesis is that he has "leaking capillary syndrome" meaning his capillaries leak fluids rather than circulating them through the system. This can be treated with steroids. The issue is that steroids suppress the immune system and this is something we can't risk if he gets another infection. So they are going to wait a few days to try and make sure he's not "brewing" a new infection and then we may try this treatment. Until then his puffiness at least just appears to be something that is difficult to see but not directly impacting his stability.

So all in all it was a good day. Here's hoping that tomorrow's even better!