Sunday, January 9, 2011

It's four o' clock and all is well enough to go to bed for three hours

People, what are you dreaming about? Send some this way, will you? I've been up all night so far, dozing holding Hannah, and now that I feel she has enough blood sugar to get her through until she wakes, of course I am so awake I need a blog and a snack. I don't feel entirely comfortable taking a sleep aid in case the human vomit comet fires up the engines. It's funny how every time Hannah has any risk factors for an MCADD metabolic crisis all thoughts of the ass face of stroke or CP or cloudy indistinct brain damage all fly right out of my head and I am paralyzed with fear that I won't guess correctly and Hannah will expire because I didn't take her to the ER. However, the two times I've been to the ER in the middle of the night she did stop puking by 2:00 a.m. but we were held hostage until at least 6:00 only to get sent home. Once they utterly failed to follow the emergency protocol outlined in her emergency letter (written by the genetic metabolic docs at that very hospital) and the second time they only failed to follow about 30% of the protocol. Each time I felt I may have jumped the gun, that if I'd waited two hours I'd see that she would start to keep fluids down on her own if given in small doses, and as long as I kept at her she'd be fine and not spend one more night as hospital baby but instead just as baby down for an evening but well cuddled in the arms of Mama. And yet the smaller she is, the shorter period of time she can safely fast so things only get better for us with the passage of time. But now I don't have breast milk to give her, not that the hospital wanted me to last time because "milk is not easily digestible." Last time we were told we could go home when she could keep down Pedialyte, which tastes like ass (purple ass, but still ass) and I gave folks a lecture about how it was unreasonable to expect that a child who doesn't like the taste of ass should be asked to consume it after vomiting her guts out and that breast milk was actually made for her and not by Monsanto and was more digestible than anything else available to her. I'm pretty sure that got me an "uncooperative wacko mom" note in the file but I did actually later lodge a complaint and request for additional training after the nurse who discharged us advised me to give my daughter nothing but apple juice for at least 36 hours. I had reminded her of my daughter's specific diagnosis and how diarrhea could be as devastating as vomiting for her risk of hypoglycemia and she said even breast milk was just a really bad idea for anyone who had suffered from vomiting. When I talked to the on call genetics doc the next day he wisely (I thought) told me that a physician he trained under said "no human condition is improved by hunger." I've begged the docs we see to give me greater guidance about how to know Hannah's sugar is dangerously low, and are they sure I shouldn't test her sugars, and all of that and what they keep sticking to is how she looks/acts/presents when other indications are she may be low. Once they said she could go as low as about half her normal intake for a while but not for too long (isn't that nicely specific) and they tell me to keep cake decorating gel on hand to squish inside her cheek if I think we are in danger and need time to transport to get her an IV. Didn't I tell you this disorder was strange? So after one barf before dinner, a happy perky child running about later, three changes of bed linens and two for my shirt/bra, I just sat in the nursery chair with her nestled happily on me on the giganto extra large boppy on my lap, and we dozed on and off and had sips of apple juice and Gatorade and she kept telling me off for trying to sing the wrong songs or telling her to sleep. She has ten ounces of liquids containing sugar on board and hasn't hurled for more than two hours. My neck and back are screaming in pain but she is now snoring peacefully, back in a clean crib and smelling only faintly of vomit, and I have hung my hat entirely on how she kept reaching about to pat my cheek, forcefully insisted I sing the Hannah songs only and pulling back to look me in the eye in the dim glow of the night light over the diaper pail (that makes it sound more romantic, right? Like moonlight on a river but somehow more fundamental) with BOTH hands on my cheeks and smiled delightedly at getting to go to sleep on Mommy over and over and over.  I'll keep you posted, please send positive thoughts of clean laundry and a dearth of extra bodily fluids.


  1. Making decisions about going to the hospital are always tough. I find that the more I get to know Charlie, the better I do at knowing how serious things actually are.

    PS: I saw a comment you left on Ellen's blog about proper alignment and wanted to tell you that a Feldenkrais practitioner would focus on that so you might want to visit one every once and a while to see if it improves things. That's assvice I know, but Feldenkrais has improved Charlie's movement and helped my mom with her chronic back pain.

  2. Aw, hon. Ugh, ugh, ugh. You have an incredible amount of patience and strength, you know that?

  3. Positive thoughts flying your way. You are the sweetest mummy. Go you!