Tuesday, September 27, 2011

What now?

It's been one week since M's surgery.  (And it's been one week since I had more than a couple hours of sleep in a row, so please excuse any whininess on my part...)

I'm worried about his recovery...

His GI system is NOT right... it's not even close. It seems that his belly can hold about 48 hours worth of food before deciding it's time to violently get rid of it. The lower part of his GI system seems to have checked out completely... working only when I load M up with super sized amounts of GI meds. (And even then not working much...)

M was very sick again last night, so as soon as offices start to open, I'll need to start calling docs... probably starting with the pediatrician. I'm hoping we can go in for an x-ray (to check for blockages in his bowel) and then come back home again. I really REALLY don't want him readmitted.

Poor R... this is totally feeding into all the fears she had before the surgery. She has phobias connected to both vomit and hospitals... She was so afraid that this surgery would turn out like last time... with in and out hospitalizations, and M vomiting for months. It's about 45 degress outside right now, but R is sitting out on the back porch to eat her breakfast... that's how stressed she is about being in the house after M was so sick last night and this morning.

And poor M! He too was worried about this surgery... he's the one who lost 20 lbs after the last surgery and suffered through months of stomach pain, medication induced diarrhea, and the indignity of (seemingly) the whole world talking about his bowel habits.

He fell last night on the tile floor... his newly repaired hip was VERY unhappy about the fall and has been terribly sore since. Even just getting an x-ray done is going to be so hard on him... painful.

I know (I believe) the surgery had to be done. Knowing that the surgeon found the labrum still intact and in good shape reinforces for me that getting the hip fixed (before there was damage done) was a good thing.

But I wish we didn't have to go through the same misery we had last time with M's GI system. It's hard for me to think about finding the energy again for the kind of long drawn out recovery M had after his last hip surgery.

I'll do what I have to do though... and count this as a learning experience... apparently M's gut can't manage any surgery... it must not have been the narcotic pain killers, or the complete lack of activity after the last surgery that triggered those problems... since neither of those were issues this time.

When I'm tired my mind travels a path I usually carefully avoid... wondering about M's future. People with schizophrenia typically don't live as long as people without sz... and FASD has it's own set of life shortening problems. M has both... and a bunch of other medical/physical problems. And he, apparently, can't tolerate any surgery without severe consequences.

I can't think about his future right now... I need to think about today. Which doctor to call first... should we have him readmitted, or try to handle things at home? (with lots of physician support, of course...)

And my younger two daughters each have birthdays during the next few weeks... (K will be 24, R will be 15!) and I'll need to get some shopping done, and plan the celebrations! (Hmm... celebrations that might be tricky if M still can't eat... :( )

But in my spare time, because painting is one of my favorite therapies (and I've already painted everything inside the house that needs painting and I can reach!), I've started working on a long-thought-about project...

..decorating my barn with a little "barn art". Yesterday, I got about half the face drawn on the barn with chalk... hopefully I'll finish the chalk part today and start painting.

It took me awhile to figure out how to take care of M and work out in the pasture on a ladder, but necessity is the mother of invention you know... and finally I just loaded M into the minivan and drove him out into the pasture to the barn. He was able to sit or recline on the lovely soft leather seats, while I worked up on the ladder just a few feet away.

Tucker was the only one who thought this was a terrible idea... I wish I had a picture of the shock on his face as I drove the minivan through the gate and into the pasture. He looked absolutely incredulous that I would do such a thing! At first he took a defiant stand just inside the pasture gate... sure I would never move that huge red thing past him and into his territory. But as the minivan kept moving towards him he rethought the wisdom of taking a stand against the intruder, and settled for snorting out a warning and tossing his head around as he ran away.

Ah Tucker... you make me smile... you are such a brave little donkey.

So, between phone calls to doctors today, I'll be out at the barn on the ladder... and maybe part of the good that will come from where we are right now is a funny little bit of barn art smiling over my pasture!

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