Oct 21, 2008

Update on Addyson

Well, my little pumpkin had a long day yesterday. She was scheduled for an Upper GI at Riley Children's Hospital. If you'll remember our original issue with this procedure, you'll know they wouldn't do the procedure the first time we went to have it done, but they did the other half of the tests. Of course, when I scheduled it this time, I made sure to ask a few questions. 1. Are you sure she needs to have this done or did you get the results you needed from the tests that have already been done? 2. Are you going to actually be able to do the test this time?

Well, of course, Nick took a half day off work to go with us, we had to skip a feeding for her because they wanted an empty stomach, and we had to head down there for the afternoon. We sat in the GERM filled waiting room for about an hour. They called her name and we went back with the nurse and explained the situation. She wanted to do some checking to see what actually needed to be done and how to do it. Wouldn't you know it? They had the results they needed from the previous test and we didn't need to be there! Oh, I was furious (still am!).

It is rediculous... the follow up care that we have received at that hospital has been nothing short of a jumbled mess. One doctor doesn't know what the other is doing, yet she has to be followed by her regular pediatrician, the devleopmental pediatrician & her dietitian, and now the GI specialist. On top of these, we used to have pulmonology too. Indiana's Early Intervention program, First Steps, also follows her for Physical Therapy (2x/month), Occupational Therapy (1x/week), and we are now being evaluated for Nutritional Therapy (2x/month) and a Child Psychologist is going to come next week for her first evaluation.

Under the direction of the Nutritional Therapy and the Developmental Pediatrician's dietitian, we started a new formula last night. Addy vomited this morning, but not more than she did yesterday morning on her old formula. The new formula is a richer calorie formula, but we watered it down slightly for the first few feedings in hopes to make the transition easier. Addyson has been on Neosure (a special preemie formula) for her entire life. Once she reached 12 months old, we thought she would be switched, but she hadn't reached the weight requirements for the new formula, so we didn't need to switch. Technically we still don't need to, but we are hoping to find a formula that her body doesn't hate. Then again, since we don't know what is causing her to vomit, it may be the formula or it may be her body... we don't have any results back, so we don't have any answers yet. It's so frustrating!

6 comments:

Susan222 said...

Hang in there. Our boys both had protein intolerance issues that required tests, hospital stays and specialized formula. After a whole bunch of trial and error we eventually got them on an even keel and now they're 11 & 13 and eat everything that isn't nailed down. Sending prayers and good thoughts your way.
Love your blog!

Ryann said...

Thanks susan222. I guess it bothers me so much because I know the level of care I can expect from that hospital, as Addy was in the NICU for 4 months. The outpatient care is just lacking in my experience. Anyone out there switch hospitals after a long while of receiving sub-par care?

Natalie said...

Good luck to you! Thanks for your ideas on formula finding at babycheapskate. I have a site for my 26 week preemie, Nicolas, at www.illinoispreemie.blogspot.com

another preemie mom,
Natalie

Tara aka "Mama Koala" said...

I hope things get better soon! I'm sorry you and Addy are dealing with all this...sending prayers your way!

Mind Body Shop said...
This comment has been removed by a blog administrator.
ispeakbeanish said...

Oh how frustrating! I'd be writing letters to the powers that be.

I hope the new formula works out. That has to be frustrating trying to find what works for your little one.