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.

We had another nurse from another state program called NICP come to visit and evaluate Brendan today. (link:http://www.azdhs.gov/phs/owch/children/highrisk.htm) She stayed for several hours and the entire time, Brendan had medium level meltdowns and crabbiness. As soon as she left, he calmed down and took a nice long nap. We guess he does not like me talking to strangers. He did the same thing the other day when the physical therapists were here doing paperwork.
After it was back to being normal in the house, Brendan had a REALLY GOOD afternoon. He was very interested in what was going on and loved sitting on my lap and watching Gramma run the vacuum. He spent some time in the big boy swing and then with just a few periods of crying, he is back to sleeping peacefully. We are hoping and hoping and hoping that this is a sign of the positive change we were looking for. It was such a bad morning for him, we just have to see how things go tomorrow.

The nurse liked some of Brendan’s developmental cues like the way he is flexing his little hands and grasping at things.
Trevor really impressed the nurse with his smiles, head control and overall cuteness. He has slept A LOT today and Gramma is doing her best to keep him awake now so that he is not awake through the night. We got my hair cut finally!! (although after the very first snip, Brendan started to cry!)

I didn’t have hands to take pictures of happy Brendan today, there is just a picture of snoozing Brendan. We got him an even more open breathable material for swaddling because he bakes to such a temperature while sleeping.

Trevor wants to be like daddy and play Xbox 360.

“Is it my turn yet, Dad?”

No, Trevor still has to wait

“Is this the right button? I am pushing it!”

“Look, I did it!!”

*** Trevor is nowhere near sitting up on his own, he is just getting to where he can hold his head up! These pictures may be deceiving because of a conveniently angled chair and the 1-2-3-let-go for half a second photography!!