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Sunday, February 19, 2006

Parenting Hazards:driving, doctors and the dangers of caring

Thursday was NOT a good day to travel. Yet, there I was driving from Janesville to Milwaukee, typically an hour and half drive, to take my son to a doctors' appointment (and yes, the plural is intentional) at the Feeding Clinic there. By the time I got to Beloit (fifteen minutes from Janesville via the interstate at normal speeds) I was thinking I was an idiot. However, it had taken me three months to get this appointment and I had someone on their way to meet me there. Alex's school Speech and Language Pathologist (who also works with us concerning some of his eating issues) took the day off from regular class work to attend. I simply couldn't cancel.

So, being the stubborn woman I am, I drove through the snow, the rain, the sleet, the hail, the thunder and the lightning (has anyone else ever seen pink lightning?), only adding an extra half hour to my travel time. And, believe it or not, it was worth it.

Now, I realize that sounds crazy, so here's some background. Alex has had digestive problems since birth. For the first three months of his life he slept on my chest (or somebody else's when I simply got too exhausted), because he refused to sleep on his back. Because he has a weak valve between his stomach and his esophagus, bile runs up his esophagus into his mouth causing intense pain when he sleeps on his back, not that we knew that then. I just knew he wouldn't sleep on his back and sleeping on his stomach caused occasional lapses in breathing. If he slept on my chest I could stay aware enough to help ease his breathing when necessary. The stress of this on me (including sleep-debt), the breast-feeding mother, was severe. I'm not one who sleeps well when pinned into position and I don't function well without at least some occasional deep sleep. It got so bad for me that I literally had a mental break-down (I required psychological intervention, but no form of hospitalization). And while the sleeping arrangements have changed, the cause for concern have not lessened since those first few months.

We've seen several nutritionists, who've all given us the same useless tactics to counter-act his picky eating. We've also had a slew of therapists try to change his eating habits. All to no effect. Simply put, Alex is under-weight, nearly to the point that it endangers his life. (His body composition is all too reminiscent of starving children in Africa, though his stomach isn't quite that distended because he does eat, just not enough food with nutritional value.) To demonstrate that: Alex is six-years-old and weighs thirty-three pounds. His three-year-old brother, who is also considered under-weight, though not as severely, weighs twenty-nine pounds. It's scary. We're not a family who has no food. We've got plenty of food. Alex just won't eat what's good for him.

Finally, last year things got so bad we got sent to the Children's Hospital of Wisconsin to a special feeding clinic there that could help us. The first few visits didn't go very well. I tried to convince them that I had tried all the methods they had suggested to no avail. They didn't work then, and I had no reason to believe they'd work this time. Yet, because they're the professionals, I tried. The Pediasure was a hard push, and only now (a year later) is he willing to drink it consistently. The medicine was a complete no-go. Alex isn't even willing to take the tasteless, odorless medicine they said could be snuck into his juice. He wouldn't drink the stuff at all. I gave up on their suggestions about the time my son started swallowing chunks of wood chewed off of wooden blocks.

After not going back for several months, I got another appointment and this time I brought reinforcements. Molly, Alex's SLP, came with and did a great job of adding to my credibility. Azurine, Alex's senior therapist with IDS was going to come, but she got snowed in worse than I should have been. Overall, it was a great success, and I really don't know what had more to do with it, the doctors, the support or the prayer.

For the first time I heard potential solutions (though, not exactly happy ones) to Alex's feeding difficulties. A major part of this is the recognition that I cannot do this alone. I'm often put in the position where I'm expected to do miracles. I mean, if I actually tried to do ALL the things I was suggested to do for the benefit of my children (not just because of their medical needs, but also the general needs of children) I would never sleep and I'd still need at least 36 hours in a day. So, for me, it's very much appreciated to have the medical professionals recognize that when I say I can't do something that I mean I can't, not that I don't want to. This in and of itself would be enough to give me hope that this round of brainstorming would be more effective.

However, that wasn't all. They came up with some real ideas that I can imagine helping Alex. The long-term goal (about nine months off) is to put him in the hospital for two weeks to go through intensive feeding training, for both of us. It's going to be hard, and it's not without risks, but it's a program that's designed to help children with whom normal means are not effective. That's Alex to a T. Short-term, they're going to help me continue what's working and improve his general health. They've devised a way to (hopefully) rid Alex of his perpetual sinus infection without me having to give him antibiotics, which never works because he never swallows a full dose. They're also going to get him the dental care he needs, and run more tests to determine if the new theories they've come up with hold water. Overall, I think we're on the right track!

Now, Alex is not my only child being seen (or supposed to be being seen) at the Children's Hospital of Wisconsin. Ben, my three-year-old, is supposed to going through his own diagnostic process there. Unfortunately, it's been nine months and let me tell you, no news is NOT good news. When Alex's doctor learned that, she was understandably upset and helped to rectify matters. Rather quickly too! I had a message waiting for me before I was even able to get home. That's after leaving several voice mail messages asking what the heck was going on, all to no avail! So, all in all, this was a very successful trip and much worth the effort.

After all, Alex is our child whom we worry about the most. He is the only one of our children whose condition could very well prove fatal. His body is the most severely affected by...well, we don't really know what it's affected by, but we know it's severely affected. His weight is not his only concern, nor is his development. He also has an eye that's at risk of going blind and has other erratic health concerns, while not being "normal" for a child with autism, are certainly exacerbated by it. So, even this small victory is a great thrill for us (and the fact that Ben will benefit too is a nice plus), and in the long-term, a major triumph. Well worth a rather perilous drive!


At 2/21/2006 10:43 PM, Blogger Lisa Renee said...

I'm glad you went, maybe the pink lightening was a sign, a good one.


At 2/24/2006 4:07 PM, Blogger Stephanie said...

Who knows? I'm glad I went too! As for the pink lightning...that sure leaves a lot up to my imagination, nobody else I've talked to saw it.

At 2/24/2006 9:21 PM, Blogger Lisa Renee said...

I've seen it here but only when it was warm and we called it "heat lightening". But given the conditions you saw it under? Sounds good to say it was a sign.


At 2/24/2006 10:48 PM, Blogger Stephanie said...



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