I just need to shut my mouth. Any time I remark about how well Brendan has done for any length of time, he turns around and shows me that I am getting too happy too soon.
Shortly after I updated the blog, his roller coaster rolled on down the other direction and he had a bad spell of coughing and struggling to breathe. His NP is unhappy that these episodes have continued after all the changes and even considered just admitting him tonight to be watched. She talked to his cardiologist and they felt that as long as he had his usual quiet night that they would let him get a little more rest at home. We have super tight parameters to watch for now and will call her and head to the hospital if he gets outside that range.
Either way, we will head to the clinic first thing in the morning at 7:30am and they want to do some lab work and put him on some different monitors and be able to spend time with him to see these episodes he is having.

The general feeling is that his PA banding surgery was done when he was about half of what he weighed now, and that they knew as he grew that it would cause the blood flow to his lungs to be an issue. Even though he is good when he is relaxed, the restriction to his lungs is starting to show when he is angry and it can’t keep up with his flailing arms hard crying extra working body.
The reflux is an unfortunate trigger to cause frequent spells of this hard work situation and they are not liking where it is headed. Hospitalization may be in our very near future. At the very least, they will move up his catheterization procedure and see about fast tracking his surgery. If he isn’t ready for that, they could have to consider adjusting the band, definitely something to avoid.

Damn, we thought we were finally on an upswing.