We met yesterday with a team of Specialist at the Children's Hospital of Wisconsin. The appointment was lengthy but a lot of good information was covered.
As I suspected, at this time, Allie is not a candidate for the 2 week inpatient feeding intervention. There are two reasons she's not a candidate:
1) She is not at a healthy enough weight.
2) She isn't able to handle a high enough food volume
I had a feeling she wouldn't be a candidate but now I know for sure. Just because she is not a candidate right now, doesn't mean she won't be one in the near future. We discussed the pros and cons of the 2 week inpatient feeding intervention FOR ALLIE (this is not the same pros and cons for every child)
She is no longer tube dependent or very little dependency
- She can start vomiting because of higher food volume
- She could shut down emotionally and refuse to eat more than she does right now
- She could start upset vomiting - basically making herself throw up again so she doesn't eat
- She could get psychological trauma - even though they claim this is rare, I have to believe it could happen to Allie.
- The program could create more food aversions - they claim this is rare but it happens to some children.
- The program is going to be very unpleasant for Allie and her parents.
Hmmmmm...... kinda happy she's not a candidate right now - lol. There is nobody telling us Allie has to go through this program. However, since Allie has every capability to eat orally, the best thing for her is to NOT be tube dependent and have her eat orally. Is this possible right now??? We don't know and that's why we wanted to meet the team of specialist and see what they say about their program. There is no doubt the feeding intervention program is amazing and they can wean children from the tube, however at this point in Allie's feeding/medical issues, I'm still not 100% convinced this feeding intervention is right for her.
The team did offer to help us with what they call a "slow wean" which from what I understand is we will have to travel to Children's at least once a month and we will work with a feeding and behavioral therapist. This is considered outpatient therapy and most of the work would be done at home by us. I'm a bit reluctant because we already did the outpatient feeding intervention (which is when we brought Allie to the Children's hospital for every meal for a week) and that program didn't help her at all. I know this "slow wean" will be different but I'm still not sure it's right for Allie.
There is still the big issue being repeated over and over in my head.....THE LONGER A CHILD IS TUBE FED, THE HARDER IT IS TO WEAN THEM OFF THE TUBE. I know this is true and with Allie already having her tube for almost 2 years, that is considered a long time, especially since Allie has every capability to eat orally. But, I just keep reminding myself that being tube fed is not a bad thing so am I really that rushed to get her off the tube? Sure, it would be nice if she ate orally every meal, but if she's not ready to eat orally, I'm okay with that too.
We haven't made any final decisions yet and there are a lot of other things pending out there. I'm sure sometime in the far (or near) future, Allie will go through the 2 week inpatient program. I think it will be needed before she is 100% tube free, however the big question is figuring out when the timing is right!!!!!