Sunday, January 17, 2010

Dear Son Medical Update~ Mixed Bag

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.


Anonymous said...

I'll continue to keep you all in my prayers...

Kath said...

I sincerely hope he's pain-free very soon.

Jaymie G said...

I can't imagine how you are able to stand all of this. Praying for you....

Anonymous said...

having a urinary catheter in all the time is painful, and a huge source of infection (kinda like a germ ladder right into the body!).
however, straight catheterizing is a smaller catheter, put in to empty the bladder and then removed as soon as it stops draining urine out of the bladder...because it does not stay in the body it is a clean (soap and water) procedure (not a sterile one requiring more expensive equipment, antibiotic soln, etc.)
the catheter is only in about 2 min, and you stand there and hold it the whole time, so you can talk to him and tell him what you are doing, etc and reassure him that any uncomfortable sensations are almost over.
once you empty his bladder, that's repeat again in a number of hours...sometimes 3x/day..this part is trial and error based on intake and how much is in the bladder when you empty it....
i know adding another treatment, and an invasive one at that, is a hurdle..but it's a mechanical solution to urinary retention instead of a chemical one...and that might be easier to manage in the long run.

Dream Mom said...

Jaymie-Yes, it's been a rough couple of weeks but it's getting better. I focus on that and the fact that Dear Son needs his mother.

Anon-Dear Son doesn't have a urinary catheter in and hasn't for a while. He had it briefly in the hospital though. That was a thought to cath him myself but honestly, I wouldn't put him through that pain for anything. As a general rule, I don't like things that are invasive or things that hurt. If I wouldn't do something, I won't let it be done to Dear Son. Plus, I have a weak stomach. I couldn't do that if I tried. Make no mistake, I do appreciate the suggestion, I am just not capable of doing much medical stuff. I'd vote for chemical in this case.

In my new post, you'll see we have a compound pharmacist making up a gel form for him so that should resolve both issues. Thank you again for taking the time to write. I do appreciate it.

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