# My baby girl has Spinal Muscular Atrophy (SMA) **URL:** \ **Category:** Miscellaneous and Personal Stuff I Must Share\ **Created:** [July 18, 2010, 3:17pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126 "2010-07-18T15:17:44Z")\ **Posts on this page:** 20\ **Page:** 29
**Author:** ![Harmonious\_Discord](https://avatars.discourse-cdn.com/v4/letter/h/74df32/32.png) [@Harmonious\_Discord](https://boards.straightdope.com/u/Harmonious_Discord)\ **Post date:** [November 14, 2010, 7:37pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/561 "2010-11-14T19:37:08Z")
> [@suranyi](#): > > I hear you. Frankly, I never heard of anyone who had to stay overnight in a hospital who had a good experience. A patient always needs an advocate on the outside you can get the staff to do their jobs right. Yes, with my friend with leukemia we had to bring in the only thing she could keep down and her husband had to sleep in a camper heated to about freezing in the vet’s parking lot. Hospital stays are horrible for all. The worst being no matter what, you can’t do much for them other than show up, which is very important. Don’t give up in supporting someone because you’re discouraged. They need the support. Your support really does matter even if your wore down, keep it up. ---
**Author:** ![Mama\_Zappa](https://avatars.discourse-cdn.com/v4/letter/m/71e660/32.png) [@Mama\_Zappa](https://boards.straightdope.com/u/Mama_Zappa)\ **Post date:** [November 15, 2010, 1:38am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/562 "2010-11-15T01:38:10Z")
> [@Bearflag70](#): > > Our first day in the hospital pre-op was [an absolute joke](http://gettyowl.com/2010/11/13/oy-vey-kaiser/)! Total incompetence all the way around. > > On top of that mess, Kaiser knows Getty takes Gentle Ease formula, but they have NONE. :smack: > > I said ok to regular formula WITH MIRALAX for now, but they fed her all day on JUST formula. :smack::smack: > > Today, still no Gentle Ease, just now got Miralax. I could have Gentle Ease and Miralax from the grocery store in 10 minutes! > > Now, Getty is distended in part due to the improper diet and can’t test the breathing machine until we get the distention down. > > MORONS! :mad: ARGH!!! Time to rip someone a new one ☹ ---
**Author:** ![vivalostwages](https://avatars.discourse-cdn.com/v4/letter/v/d07c76/32.png) [@vivalostwages](https://boards.straightdope.com/u/vivalostwages)\ **Post date:** [November 15, 2010, 1:51am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/563 "2010-11-15T01:51:26Z")
> [@Mama\_Zappa](#): > > ARGH!!! Time to rip someone a new one ☹ Detailed documentation will help–though I don’t know if they’ll have the time or energy to deal with it. Honestly, there is no excuse for such incompetence and lack of needed supplies. ---
**Author:** ![ComeToTheDarkSideWeHaveCookies](https://avatars.discourse-cdn.com/v4/letter/c/e9bcb4/32.png) [@ComeToTheDarkSideWeHaveCookies](https://boards.straightdope.com/u/ComeToTheDarkSideWeHaveCookies)\ **Post date:** [November 15, 2010, 2:30am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/564 "2010-11-15T02:30:12Z")
I’ve been lurking in this thread for some time but I just have to pipe up at the latest Kaiser debacle. What a joke. I worked my way through college cleaning and sterilizing reusable surgical instruments and hospital equipment and restocking the floors from Central Supply. Even in our rural itty bitty hospital in the middle of nowhere we had ETO sterilization machines that use gas to sterilize things like masks that can’t handle the high temperatures of an autoclave. I cannot imagine any medical staff that would opt for trying to take something home and sterilize it themselves when there has to be an ETO machine somewhere in that building. ---
**Author:** ![whiterabbit](https://avatars.discourse-cdn.com/v4/letter/w/cab0a1/32.png) [@whiterabbit](https://boards.straightdope.com/u/whiterabbit)\ **Post date:** [November 15, 2010, 4:50am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/565 "2010-11-15T04:50:12Z")
I would like to drive over and kick some asses for you guys. Unfortunately I am in Idaho and can’t afford to take unpaid time and am unsure about how my car would do, even on the owlet’s behalf. There’s no excuse for that sort of crap to be going on. None at all. ---
**Author:** ![carnut](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/carnut/32/3531_2.png) [@carnut](https://boards.straightdope.com/u/carnut)\ **Post date:** [November 16, 2010, 2:40am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/566 "2010-11-16T02:40:32Z")
OMG but our version of healthcare sucks. I had to bring in liquid my mother could handle. At least a couple of the nurses were sympathetic to our dilemma. I hope CA has an oversight board you can file a complaint with. That’s just incompetence. We are saying prayers for your little owl. ---
**Author:** ![vivalostwages](https://avatars.discourse-cdn.com/v4/letter/v/d07c76/32.png) [@vivalostwages](https://boards.straightdope.com/u/vivalostwages)\ **Post date:** [November 16, 2010, 3:04am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/567 "2010-11-16T03:04:42Z")
I used to write ass-kicking letters on behalf of my folks to their dumbass HMOs and other guilty parties involved. They really did help. I’d do the same for these folks but I’m sure they wouldn’t want to release all the personal info. ---
**Author:** ![janis\_and\_c0](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/janis_and_c0/32/21_2.png) [@janis\_and\_c0](https://boards.straightdope.com/u/janis_and_c0)\ **Post date:** [November 16, 2010, 5:23am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/568 "2010-11-16T05:23:16Z")
Prayers for your special little owl. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [November 16, 2010, 7:33am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/569 "2010-11-16T07:33:44Z")
Surgery Tuesday afternoon. ---
**Author:** ![Sleeps\_With\_Butterflies](https://avatars.discourse-cdn.com/v4/letter/s/bb73d2/32.png) [@Sleeps\_With\_Butterflies](https://boards.straightdope.com/u/Sleeps_With_Butterflies)\ **Post date:** [November 16, 2010, 7:43am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/570 "2010-11-16T07:43:55Z")
Best thoughts going out to your girl ---
**Author:** ![Neeps](https://avatars.discourse-cdn.com/v4/letter/n/a183cd/32.png) [@Neeps](https://boards.straightdope.com/u/Neeps)\ **Post date:** [November 16, 2010, 9:09am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/571 "2010-11-16T09:09:42Z")
Just wanted to say I was still here following how you were getting on. My best wishes to your little owl. I hope the operation is as uneventful as possible. ---
**Author:** ![Nava](https://avatars.discourse-cdn.com/v4/letter/n/da6949/32.png) [@Nava](https://boards.straightdope.com/u/Nava)\ **Post date:** [November 16, 2010, 11:27am UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/572 "2010-11-16T11:27:41Z")
Fingers, toes, legs and arms crossed for you and the Little Owl, **Bearflag**. _looks around for more crossable stuff_ ---
**Author:** ![Antigen](https://avatars.discourse-cdn.com/v4/letter/a/848f3c/32.png) [@Antigen](https://boards.straightdope.com/u/Antigen)\ **Post date:** [November 16, 2010, 2:35pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/573 "2010-11-16T14:35:54Z")
> [@Nava](#): > > _looks around for more crossable stuff_ You could braid your hair - it’d cross itself like dozens of times! 🙂 Sending good thoughts to the darling Owl. ---
**Author:** ![rocking\_chair](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/rocking_chair/32/2918_2.png) [@rocking\_chair](https://boards.straightdope.com/u/rocking_chair)\ **Post date:** [November 16, 2010, 4:36pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/574 "2010-11-16T16:36:52Z")
we will be thinking of you and sending thoughts and prayers at 2:30 pacific time. i hope all goes well. ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [November 16, 2010, 5:56pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/575 "2010-11-16T17:56:32Z")
A little over 4 hours to go until we begin. Feeling a little antsy. ---
**Author:** ![Salem](https://avatars.discourse-cdn.com/v4/letter/s/8c91f0/32.png) [@Salem](https://boards.straightdope.com/u/Salem)\ **Post date:** [November 16, 2010, 6:00pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/576 "2010-11-16T18:00:19Z")
> [@Nava](#): > > Fingers, toes, legs and arms crossed for you and the Little Owl, **Bearflag**. _looks around for more crossable stuff_ Your eyes! You missed your eyes! Quick, cross them now! Many thoughts and prayers to the little Owl for a successful surgery and speedy recovery. (It’s hard to type with everything crossed!) ---
**Author:** ![Bearflag70](https://avatars.discourse-cdn.com/v4/letter/b/8e7dd6/32.png) [@Bearflag70](https://boards.straightdope.com/u/Bearflag70)\ **Post date:** [November 16, 2010, 9:11pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/577 "2010-11-16T21:11:31Z")
1 hr. pre-op. Probably moving out of PICU and meeting surgical team in a few minutes. ---
**Author:** ![Tristan](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/tristan/32/18058_2.png) [@Tristan](https://boards.straightdope.com/u/Tristan)\ **Post date:** [November 16, 2010, 9:16pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/578 "2010-11-16T21:16:51Z")
Please keep us posted as best you can, but we will all understand if you go dark for a bit. My thoughts are with you! ---
**Author:** ![Dung\_Beetle](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/dung_beetle/32/7945_2.png) [@Dung\_Beetle](https://boards.straightdope.com/u/Dung_Beetle)\ **Post date:** [November 16, 2010, 9:18pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/579 "2010-11-16T21:18:07Z")
Getty-girl, we are thinking of you… ---
**Author:** ![alice\_in\_wonderland](https://sea3.discourse-cdn.com/straightdope/user_avatar/boards.straightdope.com/alice_in_wonderland/32/176_2.png) [@alice\_in\_wonderland](https://boards.straightdope.com/u/alice_in_wonderland)\ **Post date:** [November 16, 2010, 9:30pm UTC](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126/580 "2010-11-16T21:30:06Z")
The whole Wonderland family is sending positive thoughts to your little Owl **Bearflag70** - I hope all goes well. [Previous page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=28) [Next page](https://boards.straightdope.com/t/my-baby-girl-has-spinal-muscular-atrophy-sma/547126.md?page=30)