Weekend update

We are nearing the end of the month, and owe you all an update.

Part of the reason for the delay has been frustration, bordering on anger. As we mentioned last time, the plan was for the cardiology team to reassess Henry on the 31st, and decide whether he has gained enough strength for an early Glenn, needs to be listed for a heart transplant, or they need more time. Well, we found out on the 19th that Henry's surgeon was leaving the country for two weeks, to perform charitable surgeries in India. As we talked with other cardiologists and nurses over that weekend, it became apparent this meant we would need to wait another week before any decisions could be made.

On top of being told the best case now had Henry intubated through Easter before a decision was made, Paige and I have not really been able to get comfortable. A day after Henry went on the ventilator we moved rooms to be closer to the cardiologist desk. Henry had spiked a fever - which came back down in 15 minutes - and his heartrate jumped to over 200 bpm. At the time, the nurses felt he needed closer attention, so we moved down from the PICU room we had been in for well over a month. Last Thursday, we moved again to a smaller room, only to be moved again overnight into a double room. Though we are glad this means Henry doesn't need as much attention, and we are rooming with some familiar faces, the space is cramped. We've had to ask for more chairs every morning we show up (as they seem to disappear in the night). The room does have a window, but it is frosted over and faces a courtyard that doesn't get any sunlight. 

On Friday, Henry had more blood work showing no change in his BNP level (a blood marker that can be an indicator of heart failure). The level is much lower than his highest peak, so we are grateful for that. His echo also showed slight improvement in areas of his heart as well(function, not as large, less leakage). By Saturday, our frustration was beginning to show, including a flash of "angry" Paige. The attending doctor made some comment about all the baby stuff on the floor and "how it must feel like home". Paige quickly turned to her and said, "I wouldn't know since we have never been home." (First time I made a doctor go quiet J) Hopefully, this has helped the doctors realize that all we want is for Henry to get strong enough so we can go home.

As for Henry, he is doing really well! He is tolerating his feeds and is growing - a lot! As of today, he is up to 4.735 kg (10 lb 6 oz)! His last echocardiogram on Friday also showed some slight improvement in his heart: the function looked slightly better, as did the leakage in the tricuspid valve. So far, the ventilator seems to be doing what we wanted it to do. Henry is wakeful at times, just not quite as much as before he was intubated. He is on quite a bit of drugs, including opiates and anti-anxiety meds. As parents, we are concerned by the amount of narcotics Henry is needing to keep him from getting too restless on the ventilator, but we have been assured that (so far) he on relatively low doses of his fentanyl and methadone. We did have a doctor a week ago who basically "prescribed" for Henry to be held each day. I think this has helped him keep calm during the days when Paige, mself or Nana are there to hold him. It's not very common for kids on ventilators to be held, and it takes at least two nurses to move Henry to our lap - and we had better stay put for over an hour.

We do now know the cardiology team will discuss Henry again on Tuesday, to take a more in depth look at how he is doing. Since Henry hasn't shown a decline, the doctors aren't going to make a big decision on Henry, as they did two weeks ago. Most likely, with his surgeon out of the country, they will look to see which path Henry is starting to veer towards - transplant or Glenn. It will be another week before we know for sure, but hopefully we can get an idea of which way we are headed. In the meantime, we are hoping that Henry continues to put on weight, grow, tolerate his feeds. No official word on when the doctors will do another echo, but most likely it will be on Friday.

We appreciate everyone's support, thoughts and prayers. These past couple of weeks have been incredibly hard and stressful on Jason and myself, and we are hoping this will have been what Henry needs.