Thursday, July 1, 2010

Waiting for phone calls .. it feels like that's all I ever do!

Do you ever feel like this is ALL you do? Make phone calls, wait for phone calls, hate phone calls!

Peanut's mornings are rough. She wakes up retching, choking, gagging ... turning blue, spitting up. She has a fundoplication in place, but she still spits up saliva all morning while she adjusts to being awake. This had gotten much better lately, but suddenly is back in full force. The first hour she is awake generally sucks. I called the GI and the Neuro about it yesterday. The GI thinks it's seizure related, and I get that. When she wakes up in the middle of the night screaming and choking, we assume she's had a seizure. So the neuro says to increase her Trileptal a little quicker than we have been (we're still titrating up to our goal dosage). If she continues to choke/gag/retch but not have visible seizures during the day, we can assume it's not seizure related. The GI says it is most likely related.

My question was, why not admit her for a 24-48 hours EEG? Then we could watch exactly what is happening during her choking spells, and see if it is indeed seizure related or not? I understand that the EEG would be abnormal and show seizures, because we know she is having them. I get that ... but why not use the EEG to get to the bottom of the retching issues? Yesterday she retched so long and so hard that she threw up her overnight feed past the fundoplication. How horrible must that feel!

I am frustrated. Of course, the GI office didn't call me back yesterday. I love love love the GI, but hate hate hate his office.

I have a call in to the pediatrician to get Peanut referred to UCLA Epilepsy Center. They are widely known to be "the best" in the area for hard to treat epilepsy. Cross your fingers that the referral process won't take too long and we can get in quickly. Well, as quickly as anything in the medical field goes. ;)

On a different note, I have a call in to my doctor as well. I went to the Urgent Care on Saturday because my hand is hurting. I can't even brush my hair with my right hand, it hurts so bad. Can't lift my purse with it, nothing. I had surgery on my right ring finger a few years ago, they were sure it was bone cancer. There was a lump in my finger - turned out to be a bone calcification. Well now it's bad and bigger than ever, and there is a cyst on the underside of the same finger. The Urgent Care doctor said she thinks that the growths are encapsulating the tendon or something? I don't know ... she gave me one of those dumb wrist braces you wear for carpal tunnel syndrome and told me to follow up with my doctor. So I called, but of course have not gotten a call back.

Oh, and Peanut is almost out of Chloral Hydrate. You know, the drug that is the ONLY reason she ever goes to sleep at night? The one that keeps us from all going totally insane when she's so tired and pulling her hair out and screaming but can't fall asleep unassisted? That one. Which ran out of refills, and the doctor hasn't called the pharmacy back on yet.

Stupid phone calls. Sometimes they rule the entire day.


Candace said...

Oh man, I remember those days soooo well. We had a vomit protocol at our house...I am not joking we did! It was terrible!

Lacey said...

Oh my gosh, when doctors don't refill drugs it makes me so crazy!! Can your ped admit her for the EEG? If no one will listen to me, my ped will always just do it herself, I love her. A couple of people said the chipin is working. They said you have to hit update after you enter the amount. I can't check it because I set it up so I can't donate to it.

Lucia said...

Yeah, I know how that is. I HATE PHONES! I hate calling people, I hate talking on the phone, and
I hate calling, leaving messages, and then never get called back! And sometimes they even call back, but leave messages that makes no sense and doesn't leave a name and a number for me to call back to. That makes me fume!