A small Update

Well, Quinn is MUCH better. Whew! Those seizures were really frickin scary! And how she was acting, it was just really freaking me out! What happened was... After i wrote the last entry, Quinn was still having seizures. I took her to the pediatrician so he could see this....

And this...

And he told me that she is just having a lot of seizures right now and that there isn't much to do about it except wait for it to run its course. He said she was definitely exhibiting ataxia and nystagmus, but her strength wasn't bad at all. She was just a total mess! So we called the neurologist who wanted to try her on this new seizure medication on top of her other two she is already taking to try and control these particular types of seizures. The doc just thougth she was just having more seizures. So we started that medication two nights ago. It was just so crazy. My daughter fell off the toilet and couldn't get back up! seriously! I felt so bad for her.

 So we took her to see the pulmonologist the next day (yesterday). I walked in there fully expecting for him to tell me that we could remove her oxygen. I actually brought records of her stable saturations while she was inpatient and told him that her desats are very few and far between and that they are quickly self-resolved. But we also talked about her seizures that she is having, and he checked her out and felt that she was neurologically unstable right now. She was weak, she slept the ENTIRE TIME! and when she did wake up at the very rend of the appointment finally she was bobbing her head, still happy as a clam but obviously not very steady. He felt that the oxygen might help her with neurological stability and so we are suppose to keep her on it 24/7 again. This kind of threw me for a loop because I thought we would discuss removing her completely. she's had a normal sleep study and very normal saturations in the hospitals. It really sucks how much seizures take out of her!

We also discussed this pulse oximeter issue. he really feels that she should have a pulse ox! Here's the thing. it's totally insurance. This doc has been trying to get her approved for a pulse ox since she got put on her oxygen, a long ass time ago. In order for her to be approved for a pulse ox, she has to have a pulse ox nighttime reading, in order for have a pulse ox nittime reading, she has to have a pulse ox.... catch 22, right? So i have a lot of people working with me on this one now. I think we finally might be able to find a way to get this approved once and for all. The nurse said that if the doctor thinks she needs a pulse ox, she probably really needs one. It's even more concerning that she has a known seizure disorder and she stops breathing during the seizures, she also has central sleep apnea (still diagnosed even though her last sleep study was normal). but what is really scary that the nurse made very clear to me was that with seizures, Quinn could just stop breathing at night and without anything to alarm me if this happens, it would be devastating! And she's totally right. She's working very hard with me to get her a pulse ox. she said that wit hall of quinn's diagnoses and with her being on oxygen, there is seriously no reason why a pulse ox should not be approved. so this is my biggest battle right now.

I was starting to get worried too because she hadn't pooped again since the enima, though it had only been like a day and a half, i still expected for her to have pooped even a little because i was still giving her some laxatives. So Quinn finally pooped yesterday, actually all day yesterday. She was crying so bad about her stomach hurting her and she pooped tons of fluffy diarrhea. so that was quite a relief that she was able to eliminate for herself.

Today she woke up and she is still pretty wobbly and off-balance, but she just seems much better than she was before. this could be her oxygen or her new seizure med or both, i'm gonna go with both. so something is working in her favor, which is just great. Though i think she still might be having some seizure activity, they are just the petite mals that we typically see so i'm not very worried.

She was suppose to see the surgeon today to discuss how they want to go about placing this separate j-tube, and possibly fixing her anatomy. Well, first i got a call this morning that he had some cancellations and so could we come early... SURE! i said. but as we started to head down the hill, i got another call from the nurse saying that the doctor had an emergency surgery and that he would be unable to meet with us. I was SO BUMMED!!!! We have been waiting for a few weeks for this surgery consultation! I've been so anxious about it and it was canceled. I know it was canceled for a good reason, but still. My daughter is not exactly doing the best on the gtube. We know she had great success when the g/j-tube actually was in its proper place and i'd like to see her thriving again. This new low for her is just heartbreaking. I'm so stressed out from her loosing weight and having seizures and knowing that this surgery could potentially help her tremendously... at the same time, i'm stuck dwelling on the fact that this surgery could potentially harm her greatly due to them having to mess around with her small intestines. I can't help but wonder if this increase in seizure activity, this bowel movement problem and even her physical instability could all be in part due to her trying to digest this food that is stuck in her stomach for hours upon hours upon hours.

Quinn is still not in school. the nurse was suppose to call me yesterday, but she never did. I know we are suppose to meet with her on monday and hopefully, that still happens. Quinn should have been in school for 3 weeks now. She SHOULD have been in school when she was healthy! At the beginning of the school year. She SHOULD be learning with all her classmates and making new friends.  But she is not right now. And it's all because of the school nurses not getting in touch with anyone and waiting so long to come and set up this meeting.

I think I am just so frustrated and stressed out. I just want her to be healthy and never to be in pain and never to have another seizure. I just want to fix her so badly. I just want her to go to school without having to push around a huge oxygen tank, to have this tube hanging from her stomach. I want her to run without having to worry about being tethered down and clotheslined from this stupid tube. I want her to be steady enough to run and jump and play without falling. I want her body to let her be the daredevil she is inside. I just want so much for her and as time goes on, i find all this slipping away ever so slowly.