Wednesday, December 19, 2012

Surgery, Mommy secret language

First, pardon my bad math skills but were in CHoA for more like 28 hours. At any rate, the best surgery recovery time so far. The PA Stacie said they were going to do the sphincter surgery but I said that my understanding was that Dr. Riski had not recommended the sphincter procedure (where they tighten the muscles around the throat to make talking easier) and instead had recommended the p-flap (closing off the vast open air space in the back of her throat). Stacie said she would note it and ask Dr. Williams. Turns out, p-flap was right. So glad I said something. As I mentioned previously, her speech has improved. Bryan says he can't tell any difference, not in pitch or talking. Meanwhile, I hear her say new things all the time. Maybe it's just the typical baby thing where mom has to translate for other people for a while. Or maybe its because I'm hearing what I want to hear. Or maybe I need to translate because I really am the only one who understands her new speech. We leave for FLA tomorrow, and I am hoping Ellie will want to show off for her nanny and buppa like she usually does.

Friday, December 14, 2012

*brief* overview of surgery day

We checked in at 6 a.m., we were in pre-op within an hour and at 7:30 she was rolled back into surgery. There seemed to be some confusion w/the GI who wanted to do upper GI biopsies so instead she just had the ear tubes and the p-flap. CHoA was extremely busy so we were in post-op for a lot long than we should have been but it was fine, we were very well taken care of. A few of the nurses even remembered us (I venture to guess in reality they remembered our cute girl as Bryan and I are usually the type to blend in to the background). Both surgeons said the surgery went well. Dr. Gower, the ENT, said Ellie had fluid build up in both ears which she cleaned out. Dr. Williams, the surgeon, also said everything went well. Ellie was disoriented coming out of anesthesia and spent most of the day forcing me to hold her (it was fine to a point, then my muscles in my legs, back, arms, etc., started to ache and strain and hurt). I even ended up having to sleep in the crib with her throughout the night. I had packed for 3 days and 2 nights, since it took Ellie so long to recover from her palate repair. Nope, at 6:30 a.m., regularly scheduled Ellie time, Ellie woke up and was 100% her old self. She was throwing monkies, looking for trouble, pulling out plugs to all instruments, removing anything taped into or onto her body. She was talking, laughing, yelling. She brought me her shoes and ran around the entire recovery floor. the night before she went to bed she had some apple juice, and this morning she was eating and drinking like a champ. A nurse and I both remarked that if we didn't know better we'd think she just had a cold and nothing more. She wasn't sluggish at all, she hadn't need any pain medicine since 12:45 the day before. She went outside the playgound a bunch of times. Her speech and sounds has already improved, although I may only notice cuz I'm the mommy. At any rate, we were at CHoA for about 20 hours. Exciting stuff! I was convinced she would be recovering for over a week. What a champ my little girl is! Also need to discuss how the surgeon almost performed the wrong surgery!

Tuesday, December 4, 2012

Pre- Op Eval

We had pre-op today and it wasn't anything like last time, and much worse. First, they told me I wasn't scheduled. I found out that the speech pathologist had an emergency to attend to this afternoon so I had gotten bumped during the rearrangement. So instead of being seen at 10:40 I was seen around noon. So I had to keep a tired two year old under control in a hospital waiting room for almost an hour and a half. We get back there, the doctor says that we absolutely have to see genetics ASAP b/c he doesn't think her speech delay has anything to do with her palate, he thinks its an underlying condition. I ask, do you have a diagnosis in mind? He says, "Yes but since its completely out of my realm I have no business sharing it with you." Helpful. So then he says he's not going to recommend the sphincter (so that leaves us w/ the p-flap). Then he tells me we need to see neurology to determine how best she learns. Fine, whatever. Then he asks me about next fall- where is she going to school, what program is she enrolled in, is the state program supporting us? I'm like NEXT FALL?!?! How about we get through the rest of December first, huh? So then he proceeds to tell me how my daughter is special ed and will need to be coordinated with the state and them and me all working together. Look, I know my kids delayed, but you're not helping. I just wanted to know what kind of surgery to have. Then he goes, well, maybe she stopped talking because no one could understand her anyway. Well, didn't you just say you had an amateur diagnosis of a separate problem? So which is it there Dr. Bigshot? So I've ran the gamut of emotions- sad, depressed, angry, defiant, hopeful, resignation...