Monday, August 20, 2012

Fancy is such a great word

Evey has a cold and the whole world has to know (my sister should know the song lyric I'm referencing). Ive decided to get technical - enter yawns here, borrrrrrring (another inside joke).

Evey has what they call ( and by they, I mean the good test takers with their fancy degrees, aka doctors) an nj feeding tube. The n stands for nasal and the j means its jejunal which means its in her small intestine. So the food goes through her fancy tube past her stomach straight into her intestine so there's no chance of refluxing it back up. Pay attention, there will be a test later. Next Monday she'll be getting a g-tube, which is short for gastronomy tube which will mean the tube will be right in her belly with a button you can open and close to feed her through. Just so you know, I'm so calling her g-tube a gangsta tube. I mean she is going to have a hole in her stomach, what's more gangsta then that.

Over the weekend we think Evey caught a cold cause she's turning purple and hacking up some awesome looking foam and saliva. A crummy cold does so much damage to these fragile kiddos. So we go into our ENT doc today for her post op follow up. He does the magic camera through the nose and we see that the swelling looks okay, but she probably does have a virus. We also see that her epiglottis (my favorite body part by the way) is enlarged and collapsing anytime her head is tip backed. For all you future Evey babysitters it means Evey cannot lie on her back at all. She needs to be changed, bathed, and slept all in the upright position. Our beloved ent doc also sneakily told us that we should wait this cold out and not run a test to see what virus she has, because if any anesthesiologist even sees that a test was ran they'll push her surgery back weeks. Genius, I love learning all of this hospital politics and bureaucracy - no one can escape work bureaucracy and politics, not even the people with the fancy degrees.

Last but not least, the occupational therapist has been seeing Eves once a week. I'm the biggest skeptic ever, so when they told me they start therapy on these babies right away, I'm like, oh yeah what are they going to do? This is me eating my words and sentences- it's mind blowing people. We could tell from the get go Evey has sensory overload. If you try holding her hand and talking to her all at once she gets pretty worked up and starts breathing rapidly and cries. So the OT(who is officially the baby whisperer) ever so quietly picks Eve up and slowly makes eye contact and then looks away when she gets worked up and then slowly brings evey's hand to her own mouth to keep up her oral movement and Evey's eyes tell it all, she looks like she's in heaven. It was genius. It was a 15min process, but she explained these kids can only handle one sensory change at a time from sight, hearing, taste, touch and smell. So you have to do one thing at a time. Good thing we already have Evey on the waiting list to Owens autism school.

I'll end on this note. When the OT was working with Evey she kept saying I just love her so much. After about 10 minutes she looks at me and says, "your little girl gives me the "tingles" , I don't know how to explain it."

Evey working her magic as usual. Im so thankful for the "tingles" I get to feel from her on a daily basis.

- Cally

p.s. there will be a test down the road, wait for it.

1 comment:

  1. Cally, this is a beautiful story on such a special little girl. How wonderful you have already learned about sensory overload. Our son, at 24 years, can still only handle two senses at a time. Evey is a beautiful angel here on Earth, and God will give you strength every day to meet her needs!
    Love and hugs,
    Jan Wharton,
    Ben's Mom