When we saw the ENT last week I talked to him about the lack of follow-up after Goldie's swallow study and we discussed what recommendations were made. The only suggestion they had was that "Goldie drink in a seated position that provides head and neck support as opposed to sitting on her parent's lap or being allowed to stand with her cup." If the SLP had told us this I would have let her know that Goldie has had many incidents of choking on her drink in her high chair. Even if it did help her to drink safely, I can't limit her to drinking only when we she is in a high chair. She was on the verge of dehydration and not drinking enough at mealtimes to meet her fluid needs.
So, by last Saturday I was fed up. Goldie had only had 4 oz to drink in a 24 hour period. I went to Walgreens and bought some Thick-It. (I chose Thick-It because it only contains two food based ingredients. Some of the other thickeners had preservatives in them.)It took some trial and error to find the right consistency, but we did it. Within 48 hours Goldie went from drinking 4-8 ounces a day to 20!!!! She slacked off a bit after that, but has now been drinking at least 16 ounces a day for the last 4 days. I'd like to see her eventually drink more than this. Her post-op instructions suggest 32 ounces a day. I imagine this varies depending on the size and age of the child.
I really wish I had taken matters into my own hands sooner. Goldie hasn't had any bouts of constipation this week. I did receive a copy of her swallow study in the mail (2 days after speaking to the ENT) with the contact information of the SLP we spoke to. I'll have to call her and let her know what is working for Goldie.
Lately, the insurance benefit statements have been rolling in for all these tests and specialists. I told Hank they should be glad we have insurance (as am I) because if I was writing the checks not everyone would be getting paid. The SLP being one of them. Maybe this is part of what's wrong with our healthcare system. They collect a check wether they do a good job or not. This is the other doctor that wouldn't get a check from me. I wish there was more accountablility.