My sister's farm is for sale. It's located at 16045 Trapp Hill Rd., West Fork, AR. Full details can be found at http://westforkfarm.blogspot.com/
Friday, January 29, 2010
The Not-So-Latest
For those of you that don't read my wife's blog, the below is her recap of our latest trip to Arkansas Children's Hospital last week:
Well, we made it home around 10pm last night. So glad to be back. But. . .
I am fairly frustrated by the trip.
Yesterday was a whirlwind of different medical professionals in and out of Ella's room all day. It was very confusing and seemed like none of them were communicating with anyone else. Each time a doctor came into the room, I asked about the same things, but I really never got anywhere with any of them. Our local neuro had told us she'd like genetics to see Ella while we were in the hospital, and I'm fairly certain that it was more important for her to capture an event on the EEG and not just go for an arbitrary 24 hours. But, even though I asked several times, we didn't get to see a geneticist and the minute we hit 24 hours on the EEG they took the leads off.
I have had concerns about feeding difficulties with Ella. The nutritionist spent some good time with me and listened to my concerns and gave me some specifics to work on. She recommended that Speech and OT come to evaluate Ella and left to set that up. But time was running out.
Soon after that, the nurse was there to discharge us. At this point, I hadn't heard whether genetics was coming, I really wanted Ella's eating to be evaluated, and we still really didn't have a good answer on "fine, the EEG is not showing anything now, but what does it mean if she has these abnormal facial movements at home?" thing. So I started asking questions. The nurse sent the discharging doctor back in. Said that genetics would follow up later, pending one more test result yet to come in. Huh? Well, okay then. That's not consistent with what I knew from before, but I just let it go for now.
I spoke with Chris on the phone, and he said "Can you at least have the doctor look at the video of Ella's facial movements before you go?" So I went out to the nurse's station and played the clip for the doctors, who then called their attending and described it to her. She believed it was a tic movement and not a seizure. So, we'll continue with current course of treatment. And if Ellie starts to have them more frequently again, they encouraged me to video as many of them as possible and keep our neurologist posted. Okay, I can do that.
I really wish I could think of something that makes this trip worthwhile, but even for an optimist like me that exercise is proving difficult. I guess I can focus on the nutritionist's suggestions and try to get Ella's eating on track. Fortunately, the early intervention program that we are in the process of getting Ella admitted to will be doing speech and OT evaluations too. And of course, we learned that Ella's EEG shows no evidence of residual infantile spasms. Which is just awesome! And we did get to see Aunt Kristin and Uncle Shawn, and my friend Jennifer, so that was good too.
Well, we made it home around 10pm last night. So glad to be back. But. . .
I am fairly frustrated by the trip.
Yesterday was a whirlwind of different medical professionals in and out of Ella's room all day. It was very confusing and seemed like none of them were communicating with anyone else. Each time a doctor came into the room, I asked about the same things, but I really never got anywhere with any of them. Our local neuro had told us she'd like genetics to see Ella while we were in the hospital, and I'm fairly certain that it was more important for her to capture an event on the EEG and not just go for an arbitrary 24 hours. But, even though I asked several times, we didn't get to see a geneticist and the minute we hit 24 hours on the EEG they took the leads off.
I have had concerns about feeding difficulties with Ella. The nutritionist spent some good time with me and listened to my concerns and gave me some specifics to work on. She recommended that Speech and OT come to evaluate Ella and left to set that up. But time was running out.
Soon after that, the nurse was there to discharge us. At this point, I hadn't heard whether genetics was coming, I really wanted Ella's eating to be evaluated, and we still really didn't have a good answer on "fine, the EEG is not showing anything now, but what does it mean if she has these abnormal facial movements at home?" thing. So I started asking questions. The nurse sent the discharging doctor back in. Said that genetics would follow up later, pending one more test result yet to come in. Huh? Well, okay then. That's not consistent with what I knew from before, but I just let it go for now.
I spoke with Chris on the phone, and he said "Can you at least have the doctor look at the video of Ella's facial movements before you go?" So I went out to the nurse's station and played the clip for the doctors, who then called their attending and described it to her. She believed it was a tic movement and not a seizure. So, we'll continue with current course of treatment. And if Ellie starts to have them more frequently again, they encouraged me to video as many of them as possible and keep our neurologist posted. Okay, I can do that.
I really wish I could think of something that makes this trip worthwhile, but even for an optimist like me that exercise is proving difficult. I guess I can focus on the nutritionist's suggestions and try to get Ella's eating on track. Fortunately, the early intervention program that we are in the process of getting Ella admitted to will be doing speech and OT evaluations too. And of course, we learned that Ella's EEG shows no evidence of residual infantile spasms. Which is just awesome! And we did get to see Aunt Kristin and Uncle Shawn, and my friend Jennifer, so that was good too.
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