Evan has been doing pretty good since we’ve come home. We had an appointment last Friday to have his chest tube stitches removed and although he freaked out, he was fine in the end.
Evan still receives 50% of his nutrition through an overnight tube feeding. We were giving him formula made with Nutramagen but it really isn’t appropriate for toddlers. While in-patient, we switched to Complet Pediatric and at first he didn’t tolerate it but then his body took to it and he tolerated it just fine. It’s still a bunch of chemicals but I do think his body responds to it better. Except… he started to not tolerate it at night and we aren’t exactly sure why. His button balloon burst so we had to put in a new one. Shortly after that he stopped tolerating it and his belly got very big and distended for a couple days. At first, I was thinking that he might be retaining fluid with an effusion because he also wasn’t peeing a whole lot. I didn’t see any signs of respiratory distress and he never complained of anything hurting. After a couple days, it went away and he started peeing more. Not sure if or how any of that is related. We ultimately reduced his overnight feed volume and rate and he is back to tolerating it again. Per the growth chart it says he is above average for weight but below average for height. Dude has been around 33 lbs and 3′ tall for a long time. We’re trying to fatten this guy up so we need to get as many calories in him as possible!
Yesterday we had our first cardio checkup. His oxygenation is only 85%. He was in the low 80s before surgery and I was hoping for the low 90s after surgery. There is a chance his numbers will improve as his body continues to heal. He’ll never be 100% oxygenated because he has a fenestration (the blood still mixes a little). The doctor mentioned that if his numbers don’t improve in 6 months then maybe there is something to look into. Or maybe this is just where he was at. I was hoping to have a pink baby with no more blue lips or hands but I guess we’ll have to wait and see.
We did an echo and Dr. Dommer agrees with UofM’s assessment that Evan still has mild to moderate decreased function. She showed us on the echo where the vast majority of the heart showed some vigorous compression and squeezing and one area that just kind of hung out and sat there. She said that it looks the same as before and that it is probably related to some localized event at that part of his heart – something that damaged that part and that we can’t seem to get to come back. The new pacemaker electrode was placed pretty much at that site and that area just doesn’t want to squeeze that hard. So, the best we can figure is that it isn’t getting worse but it won’t get better. It’s just how he is. We were on Digoxin to help with the squeeze and we stopped taking it at UofM and Dr. Dommer agrees to just stop using it. We’re getting as good of function as we can at this point.
She did also happen to see that there is some fluid in his pleural cavity. That dang right lung still has an effusion that is a little too much right now. He also has some fluid in his abdominal cavity (the term is ascites) I think located by his liver. Dr. Dommer said that for Fontans, during the initial fluid re-balance that some osmotic pressure can cause some fluid to accumulate in the veins in the liver and that this isn’t uncommon but needs to be monitored. This could also explain why his belly looked distended a few days ago… I wouldn’t be surprised at all if this is related and that they would have found more fluid if we came in when he was bloated. I knew that wasn’t just a bunch of toots! Because we mentioned his belly, Dr. Dommer sent us to get an abdominal x-ray just to make sure. We made an appointment to come back next Wednesday and left cardio to get the x-ray. Well, after looking at the x-ray, Dr. Dommer stated that he has a “pretty good” amount of fluid around his lungs and our appointment was changed to Monday morning. We were told to just continue to monitor his breathing to make sure he isn’t under distress. I’m not sure what will happen Monday – maybe adding another diuretic or – god forbid – inserting another chest tube to drain it all out. We know how well that happened last time… So… that means we would be taking another trip to UofM.
Through it all, he hasn’t really been in any pain, he’s been playing like crazy, and talking nonstop. I hope we get some good news on Monday.
I also want to take a moment to remember our friends Max and Zealen on their 3rd and 2nd angelversary. We miss you and think of you often! Our hearts and prayers are with your families always, and especially today.
I also want to continue to ask for prayers for Brittney who is waiting for a new heart and Charlie who is the toughest 5-month old I’ve ever met. You can visit Charlie’s facebook page here and you can support the family through t-shirts or through Go Fund Me.
