Saturday, May 15, 2010

day number 5

akaiya has been in the hospital since tuesday night. she started having fevers on sunday, but they would come down so i didn't take her in to the doc. she wasn't really eating that well, but i figured that was to be expected if she was feeling a little poorly. then tuesday came around and the lil one's temp went up to 105.8. so off to the hospital we went. they ran a bunch of tests and couldn't really find anything. so her pediatrician ordered a chest x-ray even tho her chest sounded okay to the docs checking her. they found pneumonia. we were admitted and here we've been since then. she hasn't had any fever since wednesday morning, but she has been running cold. we have been told that the antibiotics are working and her chest sounds good (no one ever said it sounded i don't view this as an improvement, but they seem happy about it). the main concern i have at this point is that she is not eating. the main concern they have is that she is having seizures. she isn't having any more than usual and they are not as intense. her pediatrician is upset because i use a specialist (neurologist) that is not associated with this hospital. he has told me that if i'm not willing to switch he doesn't know what he can do for us, and that he doesn't usually work with patients if they have outside specialists. well you can be damn sure i will not be working with this ped after this whole escapade. the person that is important here is akaiya, not you dr. , i am going to get the best care possible for my daughter. if that means having one doctor from each of the hospitals in this large city, then that's what i will do. when she got sick my head said "take her to u of c"...hope is closer tho and her ped is associated with hope so here we are. i'll be sure not to make that mistake in the future if the kiddo needs the hospital again. so, they tried calling kaiya's neuro and had to talk to one of his partners, the head of neurology came in and talked to us and said that her med levels are within range and there is nothing she can do for the partner's recommendation they gave a bolus of phenobarbital last night b/c her pheno levels were on the low end. needless to say, the kid was knocked out and slept very well all night long. as did her mama surprisingly. so basically we are waiting for her to eat, or for the doctors here to be willing to come up with some type of plan to figure out why she is unwilling to eat. she has been happy for the most part. they did a blood draw yesterday from her wrist b/c it's impossible to find a vein on her...she screamed and was pretty miserable the whole day afterward. she woke up all smiley and happy this morning tho. and we got a container of pudding into her. yay! it took an hour and a half, but that's more than she's eaten since monday. she's sleeping peacefully right now.

i know i've missed a lot of important parts of what is going on...but it's been 5 days in this little room and i'm starting to lose it a little i think. facebook has more accurate updates.