Monday, September 17, 2012

The Hunger Games

Audrina started throwing up just before we left the hospital from the pH probe. They thought it was just irritating her from the tube so they let us go home.... but I quickly learned it was going to be a lot messier (literally!) than that. Today is Monday, and she's been throwing up pretty much every feeding since early Thursday morning. Its scary - she chokes really bad and we fly to her side and have to pat her hard on her back and flip her over to clear the vomit. I'm sure you all know, its hard enough watching your child be sick, and we felt terrible for her having that on top of already being so miserable/fussy all the time....but then the strangest thing happened.

Our little screamer girl STOPPED crying. She would puke and smile for hours afterward. We never get that long of a period of happiness out of her. She had a wonderful weekend aside from the vomiting - we are concerned for her hydration but thankfully have been keeping enough pedialyte and water in her to stay out of the hospital. For once, her not peeing works in our favor! :)

Sunday afternoon she started to keep a little bit down, and almost immediately her appetite returned - and so did the screaming almost simultaneously. As I am sitting on the couch, it suddenly hits me:

How do you feel when you are throwing up? Like not eating anything.

Today the pukes came back - and so did the smiles again... and that's what confirmed what I was already thinking: She is screaming because she's hungry! Just like Addison used to :(  The only time she gets relief is when she doesn't feel like eating. How awful.... when you are so miserable that throwing up all the time is your version of relief. I am hoping Dr. K will prescribe both girls an appetite supressant. A life that doesn't revolve around food - a mom can dream right? With G-tube surgery happening soon, I'd like to see this better managed so we can tell if there's any problems after surgery with pain, I'd hate to be assuming its all from her feeding issues.

Addison meanwhile, continues to gain at an alarming rate despite barely eating. She's developed a hoarse voice and refuses to eat about half the time. Her coordination has worsened, I'm guessing due to the extra weight she's not used to carrying around. I called to request thyroid testing and a couple other things today - she's not eating even close to enough to be gaining a pound a week. She's rapidly approaching an unhealthy BMI and her weight-for-height ratio is considered overweight. I don't even know who to see about it, our pediatrician and everyone is just kindof in waiting mode to see what they say in Georgia. Everyone assumes its just part of their dysautonomia - which is probably true - but we still have to live with it.

We are very concerned for the future and their quality of life with this issue, as everyday it seems to become more of a problem and I can't imagine how they will be affected in a few years when they are old enough to understand, if no one can find a way to help us treat it.

Tomorrow we see peds surgery and will get some labs to discuss the vomiting in Audrina.


  1. I've been following your story for a while (beginning on the BBC NBB). I am in total awe of your strength and the amazing job you are doing for your girls. Your girls are often in my thoughts. I wish your family all the best and hope you get some answers soon.

  2. Hoping the clinic in Georga can help the girls.It sounds like an appetitie suppresant will help them feel better.
    Lots of hugs.

  3. Great observation and how wonderful that Audrina was smiling and happy. We are praying that your appointment with Peds goes great tomorrow.