Sunday, January 23, 2011

It Won't Hurt Our Feelings If You Don't Want To Read This One

Because it's about poop.

This strange thing happens to your brain when you have a child and suddenly it seems completely acceptable to talk in all seriousness about subjects you would previously have limited to immature jokes. And you don't remember what you used to be like until you're discussing poop consistency with someone in a different life stage and something in their face makes you cough and change the subject to something safer. Like politics.

So. For some still unknown reason, Collin went on a poop strike two weeks ago. He was plugging along just fine, pooping at the same time every day, and he just stopped. Nothing in his diet had changed. No medicine changes or water changes or any other changes of any kind. Somehow, I didn't even realize what was going on for a few days. Once I did, I increased his fluids to move things along, but no go. (winkwink, nudgenudge) Finally, after five days, we started the Miralax. Still nothing. Then came the first retch. He was clearly constipated and the pressure from pushing was making his Nissen wrap feel like he needed to either gag or throw up. And that's when we busted out the first glycerin suppository.

If you have never had to administer a suppository, just take a second right now to give thanks for your ignorance. There are definitely worse things, but it's just not pretty.

The bad retching didn't come for a few more days and I felt pretty sure we were headed for the hospital, but we were able to utilize our in-home oxygen to keep his lips from turning blue with the extended retches and that helped him to start feeling a little better. After a while, the retching seemed to be more from anxiety or tension than pooping and the only thing that would calm him down was singing, so Kyle and I ran through our entire repertoire until we got to the songs that have words like "something something something".

Besides the retching, the other concern with constipation is that it's a major seizure trigger. At least two of Collin's extended seizure spells in 2010 were set off by constipation. And even after over six months of seizure control, just the thought is enough to put you on edge.

Needless to say, we were anxious to keep things moving along, so we upped the Miralax, used suppositories every few days, and added yogurt and lemon juice to his meals. Plus tummy massages and warm baths and anything anyone suggested.

I do have a little bit of decency, so I won't go into too much detail of the ups and downs of consistency, color, and smell over the ensuing week. But just know that I've done a lot of smelling and peering into and squishing dirty diapers recently. We are still battling this, giving Miralax at least once a day, calculating a probiotic into his diet, and pumping him full of fluids. We look down the poor guy's pants about twenty times a day, our shoulders sinking when there's nothing there. Talk about pressure.

Tuesday, January 18, 2011

New Year, New You

I was looking for pictures to use for a "This Time Last Year" kind of entry, but couldn't find any that weren't in the hospital. And then I remembered that that's because we spent most of this time last year in one hospital or another. Mid-January was an emergency trip for retching and ultimately created more problems than it solved, including seizures and apneas. Soon after being released, we started our series of trips to Cincinnati Children's Hospital for tests and second opinions of all kinds and, ultimately, initiation of the ketogenic diet. At that point, Collin had just begun to open his eyes more regularly. He didn't cry or react to pain, made hardly any sounds, had no head control, and had just started moving his legs again. We had no seizure control and he was still being fed by a feeding pump to decrease retching.

This past week was the anniversary of our worst hospital stay ever and we spent it in semi-awed thankfulness. Collin can lift his head from his tummy. He can sit in his bumbo. He can watch a video. He responds instantly to touch, sound, light, and movement. He is eating whole foods through his g-tube at regular meal intervals with no retching. He has been seizure free for over six months. He hasn't stayed overnight at a hospital for 11 months. He cries when he is uncomfortable or upset. He grouches when he's mad and laughs hysterically at a wide variety of stimuli. We have so much fun and Kyle and I look at each other in disbelief almost daily.

This month is also the anniversary of our involvement in the NACD program. Monday was his one year reevaluation and I remember so vividly our initial evaluation, in which Bob Doman squeezed Collin's foot (getting no reaction) and said, "Yep. His brain isn't getting much information." It was hard to hear and yet relieving somehow. This reevaluation had a very different feel, particularly when we discussed starting to structure some alone time for Collin throughout his day. Apparently, he needs some more time to just be on his own so he can process and practice the things he's learning. It honestly crossed my mind that he might be joking at first. I've spent the entire past year trying to stimulate Collin during each of his waking moments, knowing that if I left him alone, he would stare off into space and/or fall asleep, and now I'm supposed to make sure he has alone time? Surely we couldn't be talking about the same boy? This morning, he started to get grumpy during one of his program sequences, so I put him on his tummy and left the room and, sure enough, I came back to find a happy, wiggling Collin. It's hard to believe that one short year ago, we had a son we barely knew and who now is becoming independent enough to need time away from us.

POSTSCRIPT - Immediately after I posted this the first time, Collin launched into a super scary hour-long retch fest that got him put on oxygen to keep his lips from turning blue. You know, just to keep things interesting.