Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Sunday, January 11, 2009
Sleep Deprivation is a Crime Against Humanity
You may have noticed the brevity of my posts over the last 2 months. Bo was suffering from frequent and severe reflux (at night it was hourly at its worst, and during the day several times a day). Not to gloss over the torture of vomiting in and of itself, the experience of waking up to the sound of your fragile child gagging and crying at all is bad enough. Now imagine every hour on the hour. Now imagine every night, this torture, for 2 months. I was as close to losing it as I have ever been. Nothing, of course, can compare to the anguish and anxiety of being inpatient. Even if you get to "sleep" through the night. But I'd say this was a very close runner up.
And imagine trying to overcome an oral aversion when the least blip in the day or night makes you throw-up. Feeding therapy was just depresssing. And I was beginning to wonder if all that acid was going to tear a hole through his throat. And I was beginning to wonder if it was even safe for me to drive a motorized vehicle without supervision.
We tried everything. Magnet therapy, heightened sleep wedge, increased daily Zantac dose, starting Previcid daily, cool mist humidifier, prayer. I don't know what individual or combination of things did it, but something is working!
He has only been getting up 3-4x/night (these last few days). And I'm praying, please God, let this stay stable while I regroup my brain and my ability to concentrate and stay employed. And I'm further praising God for whatever reprieve we end up getting. It's a desperately needed break.
So many people are so bummed about all the snow. I just can't help smiling with my recently regained sanity. It's true, you know, prolonged sleep deprivation tactics are considered torture according to the International Warcrimes Tribunal. I guess if I'm going to be tortured, better at the hands of a big-cheeked somebody than anybody else. Now, to bed!
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1 comment:
you are a living miracle. i love you guys! (*sniff sniff*)
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