Wednesday, March 14, 2012

Happy Belly.

KayTar has been on Elecare Jr. for roughly two and a half weeks now and it has been EXCELLENT! She has vomited once, but it was due to respiratory junk, not GI issues. She has had no tummy pain, no complaints to being too full, nothing! In less than 3 weeks, she has gotten back up to full volume feeds (8 ounces) and she is *almost* back up to full rate!! It has been over six months since she's been able to tolerate this! She is also eating a lot more by mouth, which is wonderful. We didn't realize how poorly she was doing on Pediasure until we switched.

However, getting her prescription changed has been a NIGHTMARE. After the first few days on it, I talked to her pediatrician about getting it changed, but there have been multiple delays on both ends. The main issue is that the clinic is on the HHC's (home health company) Do Not Call/Do Not Fax list...so even if the HHC finds errors in the paperwork, they don't contact the pediatrician. Basically, if I don't call and find out the error and communicate it to the doctor, it doesn't get communicated. All paperwork has to be delivered/picked up by hand, so even if the doctor does what I ask...it can still take a few days before the HHC picks it up and processes it. At this point, we are over 2 weeks out and it has not even made it to insurance for authorization. AGH!

The GI clinic has been floating us with samples, but it has been TWO WEEKS. Two weeks is more than enough time for a script change, honestly. The nurse I spoke to this morning didn't know if they would be able to give us anymore samples, so we were in limbo all day waiting to hear back...meanwhile, we're on the tail end of our very last can. Boo. She is doing SO incredibly well on it, I would really, really hate to change anything. Unfortunately you can't just pick specialized formulas up at the store! I have Pediasure, but she was doing so poorly on it that I don't want to put her through that again. I was thinking that we might need to switch to Alimentum temporarily while we wait for the prescription change, but I got a call from the HHC this afternoon saying they would ship us ONE more can. Then I got an online message from someone who is willing to ship us 6 cans, no charge, just shipping (6 cans cost roughly $130!). Then I got a call from the GI nurse saying that the doctor gave the okay to give us 6 more sample cans we can pick up tomorrow. So that is 14 days worth of formula, I HOPE that 2 more weeks is enough time for the HHC and pediatrician to work out the prescription change. It is pretty miraculous we've been able to keep her on it this long without the paperwork in place, but I am incredibly thankful that it has all worked out so far!

5 comments:

Bri said...

Why won’t the HCC communicate with the clinic? I don’t get it. (I am from Australia so our health system is VERY different to yours).

Kyla said...

I believe it is the clinic's choice, due to errors in communication in the past they want every exchange in person...which I can understand, but it is making everything worse in our situation.

dlefler said...

Goodness, gracious - what a nightmare. I still haven't looked online to get a mickey button from Oley, but we've been going through similar struggles getting approval for the prescribed g-tube parts, since Nolan has his for venting more than feeding. Insurance will only cover the parts if it is for feeding!

~aj~ said...

It is simply fantastic that she is feeling so well on Elecare Jr. I kept hoping that finding the right thing would help her get back to full feeds. Hope you're able to get your prescription soon!

Shellye said...

That's great news about KayTar doing so well!!!

Let's hope they get the prescription switched over in LESS than two more weeks. I can't believe it takes that much time...