Fri 12/10/2010
This morning, John and I met with the psychiatrist and social worker assigned to Áine's case.
The psych's "dream plan" is that Áine be discharged from the NPH on Monday, go in for g-tube placement and be discharged from the pediatric floor on Wednesday. This seems unlikely however because of the GI doctors inability to look at the whole person despite the explanations given by many of Áine's doctors. We will allegedly have the final word on the g-tube situation by the end of today.
The back-up plan is that barring any unforeseen circumstances over the weekend, Aine will be discharged from the NPH on Monday.
She will have to see her neuropsychiatrist at UCLA every two weeks. She will be scheduled to see the head of the sleep medicine dept in an outpatient appointment.
I am struggling with the fact that until sleep and g-tube placement issues are solved, in essence nothing has changed except that there is now another medication for me to try to get in her.
Additionally, the nutrition/dietitian team at UCLA has switched her to Vanilla Elecare --five 8 oz. bottles per day. The cost of this of course warrants a third mortgage on our house, but if she has a g-tube then it is covered by insurance.
I am not so frustrated about the sleep issue as I am the g-tube issue. Because if all her meds were in her on a consistent basis, she would naturally be "knocked out" and then of course the positive effects on her behavior. But I guess that's too obvious, right?
In any event, that's the latest.
Oh, we were able to visit with her today. She was very sleepy and heading off for a nap because of the meds. They brushed her hair in two curly pig tails! She seemed happy to see us.
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2 comments:
After reading everything, it sounds like the g-tube would be a huge help with some of her issues. I hope that the GI doctors were able to come to some kind of solution. What I don't understand is how they can't "see" the whole person-especially in this case where it is certainly obvious that other challenges exist. I can't imagine how frustrating it must be. Despite all that, it must have been wonderful to see her, pig-tails and all. :) Keep us posted when you can. A lot of people are rooting for Team Madigan.
It must be very frustrating to see a solution for your child that the 'experts' refuse to see. I am so glad you were able to spend some time with her. And it looks like tomorrow she'll be back full time. I'm sorry this trip wasn't more helpful and I pray that the 'experts' get this figured out soon so you can have your happy baby back. :o)
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