Sunday, September 25, 2011

We're not quite on the "other side"...

... of M's surgery drama yet, but I think we are getting close... so I thought it might be a good time to post an update.

Surgery was Tuesday morning (the 20th) and went very well. Back in February of 2010, when he had his first hip surgery, the surgeon found more damage to the joint than he'd anticipated. The surgeon had gone in expecting the need to repair the labrum and found instead that it was completely worn away in places... nothing left to repair. (As a result, M has degenerative joint disease and the expectation of lifelong pain, to some degree, in that hip.)

During this latest surgery, the surgeon again expected to have to repair the labrum... but found instead that it was in good shape! No repairs were needed. So all he needed to do was reshape the head of M's femur.  Because the surgery was much less invasive than last time (and because M's schizophrenia interferes with how he processes pain), M didn't need any narcotic pain meds after surgery... which gave us hope for avoiding the kinds of problems that led to the bowel impaction he ended up with after his previous hip surgery. (Narcotic pain meds slow GI motility, something M already has problems with.) He was discharged on Thursday with my only major concern being that neither GI, nor Behavioral Sciences, had provided the support they were supposed to while M was in the hospital. That support had been part of the "package" the surgeon and I had put together to support M and help get him through surgery and recovery as easily as possible.

I'd had high hopes for both the GI and Behavioral Sciences people... the surgeon had formally requested consults from both departments during M's stay in the hospital. But no one from GI ever showed and after waiting hours for them to come give us some direction in terms of restarting M on solid food, the nurses and I just let him eat (the very  modified low fat diet we thought he could digest). M was discharged without ever seeing anyone from GI. Behavioral Sciences did a bit better... they did show up and immediately made sure I knew they wouldn't change any meds (What? Had I asked them to? No!) then asked what I did need... I said I needed to "borrow" a therapist to help with M's PT. The crutches were a huge challenge, triggering a lot of anxiety... and the PT working with him didn't have a great rapport with him. (Her way of trying to motivate him was telling him he couldn't go home 'til he could get it figured out... nothing like a little pressure to trigger more anxiety!) Anyway, the behavioral sciences doc left to go find me a therapist I could borrow for an hour or so and never returned.

Sigh...

M seemed fine at discharge... his gut seemed to be working, and his pain level was minimal.  He was having trouble remembering which hip had been fixed (the right one this time) and kept putting full weight on that leg (which he wasn't supposed to do for two weeks) but otherwise he seemed to be doing great. They sent us home with the CPM (continuous passive motion) machine again, a neat little plug in ice pack, and a set of crutches. I climbed up into the hay loft of the barn as soon as we got home and got out his walker and raised toilet seat, and I thought we were home free.

My optimism came back to bite me though... M began having severe stomach pain Friday night, and the terrible vomiting he had after his last surgery returned too. (He threw up so hard that night that he broke blood vessels in both eyes! :(

Despite giving him LOTS of miralax and carefully monitoring his diet both before and after surgery, his gut had shut down again.

So... I called Children's Hospital and threw a smallish fit (over the lack of the GI support that the surgeon had requested), panicked just a little (I can't tell you how much M and I don't want a repeat of the impaction he had last time!) then hunkered down to try and get things back on track.

Now... almost 48 hours later... I'm thinking I might have caught it early enough  to avoid another trip to the hospital. (If he isn't MUCH better today, he has to be readmitted. :( ) He seemed better by last night, but yesterday was rough...  He was back on a clear liquid diet, and was HUNGRY (he's always hungry, his GI problems rarely take away his ravenous hunger), but nothing was moving through his GI system. He was getting edgier and more (psychiatrically) symptomatic by the second over his clear liquid diet. At one point he was starting to disconnect over Ramen noodles...insisting that he had to have them... NOW!... and WHY are they solid food??!! So I offered to call the pediatrician to ask if he could have them. Luckily our regular pediatrician was on call yesterday, because it was a very strange conversation... me asking if Ramen noodles are solid food and her trying to figure out just how bad things had gotten over here for me to be asking that question. She finally said it was better for M to just eat some Ramen noodles, even if it meant they might come right back up or make the GI problems worse... than to lose his mind over a packet of Ramens.

I agreed, and he got his Ramens. ;)

So that's where we're at... M slept through the night last night for the first time since his surgery and is still asleep. We're going to have to keep his "bowel regimen" going for who knows how long... but that's ok. As long as his gut keeps working I don't mind loading him up with stuff to keep his GI system functional.

M just woke up so I've got to run, but before I forget... M LOVES to get cards, so if you have a minute to send him a card or short note, it would make his day. (If you don't have our address, just leave a comment with your email address, and I'll get it to you.) Thanks :)

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