Things have been a bit of a mixed bag since we've been home. As you may recall, Dear Son was hospitalized for pain/crying two weeks ago and was diagnosed with Pneumatosis Intestinalis and urinary retention due to the Scopolamine patch (He wears that to dry up secretions.). Thursday night, he cried out on and off all night, much more than he did the last few days at the hospital. He slept all day on Friday and then Friday night, things seemed better. He slept relatively well and it was as good as it was at the hospital-very little crying out except when he needed to be rolled over.
Friday morning, he looked great. I got him up and sat him in the recliner and he started crying. He cried out as if he was in pain for quite some time. It seemed like leaning back even slightly, causes him some pain. Finally, I moved him to his wheelchair since the back is straighter and he is upright. That still didn't work. He cried out in pain for some 2.5 hours. I wasn't sure if I should give him some Tylenol for pain for try some Risperdal. I paged the doc but didn't hear back. Finally, I gave him some Risperdal and put him in his bed where he settled down and slept for a few hours.
Last night, he cried out most of the night. The issue seemed to be secretions. The half patch isn't working very well in terms of drying up secretions so he's choking on his saliva. In desperation, at 3 a.m. I gave him some Risperdal. Some time later, I removed the Duoderm and put the whole Scopolamine patch back on. I am sure much of the med that was on that side of the patch had been removed, but it was still more than the half. In general, I know I need to protect his airway so that he doesn't aspirate however I worry that if I go back to the whole patch, he'll be screaming again in pain from the urinary retention.
In terms of urinations, it's a mixed bag. They have decreased over time:
1/09/10: 9 urinations (Decreased patch to 1/2.)
1/10/10: 7 urinations
1/11/10: 8 urinations
1/12/10: 5 urinations
1/13/10: 3 urinations (Stopped IV fluids and TPN and started our formula/water regime.)
1/14/10: 3 urinations
1/15/10: 1 urination
1/16/10: 3 urinations
After being up on and off most of the night, he's sleeping now. Typically, he has the most issues between midnight and six a.m. They tell me that most kids have the most trouble at night.
I suspect that he may never be totally well again. While things seem bad at times, for the most part, it's a heck of a lot better than the blood curdling screams he had prior to being hospitalized. The only time that occurred was yesterday for 2. 5 hours when he was in the recliner and wheelchair. I thought perhaps it might be the pneumatosis however the GI surgeon assured me that it doesn't cause pain. I'll have to touch base with his doctor tomorrow.