Delay

This has been a long and difficult week, and while we still have a few more long days ahead of us, Henry seems to be doing well.

Henry threw us a curveball last week with more blood in his stools. This was pretty devastating to us, as it delayed our homecoming. What made it even more frustrating is that we had seen some blood in his diapers the week before his surgery, and we asked several times if all the nurses and doctors were OK with that. At the time, the consensus seemed to be that the GI tests done ahead of his G-tube surgery, along with the surgery itself, could have caused some irritation and bleeding. Since then, however, we have not been able to get a straight answer - no one seems to know, or be willing to commit to a reason.

We have spent the past week trying to rebuild our confidence in the staff here. The fact that our concerns turned out to be valid after they were repeatedly brushed off made it difficult to trust what we hear from the doctors. It has been a struggle to regain that trust though, since no one can really tell us anything. We had one nurse tell us on Saturday that of her dozen years at Children's, she has never seen pneumatosis in a heart baby, post-Glenn - and Henry was the first of two babies with this scenario this week. We have been reassured by the team that they do not believe it is due to decreasing heart function. Their reasoning behind this is that his echocardiogram on Monday showed no change, and his BNP number remained low. 

As far as Henry goes, he has not eaten since Monday night/Tuesday early morning, and is rather upset about it. He does appear to be more comfortable now that at this time last week. Even though he is hungry, the pain from his surgery and his vaccines seems to have gone down. We did also backtrack a step this week on his methadone wean to try and help him be comfortable. We started on antibiotics the morning we transferred back to the PICU. He will continue on the antibiotics and no feeds for a full week. Henry will have another ultrasound to check for pneumatosis on Monday. This was how it was originally found last week, as all of his abdominal X-rays have been negative. If the ultrasound is negative, and the echo on Tuesday looks OK, then we will resume feeds on Tuesday.

It's so incredibly hard to listen to Henry's hungry cries and not being able to do anything for him. Our hope is that this was truly an artifact of his G-tube surgery, and we can get back on track this week for homecoming in June.