11/12/10

Was really hoping to get the results of Quinn's pulse ox study today, but no one called me back so now we are stuck waiting until MONDAY! Grrr!

Quinn's MRI was normal though. It's actually the first MRI that was found to be normal... all the others showed paranasal sinus disease and lymphnoid issues. This one was totally clear. It was done by a different radiologist and i'm hoping to have her neuro actually LOOK at the previous MRI and compare the most recent one to be sure that the white matter thing wasn't just over looked and flagged as normal. This is surprising to me considering that her seizures have intensified since her last MRI was done. But, i decided not to worry about it. It is a good thing that her MRI was normal. Q has been on a nasal steroid for like 2 years or something like that so it's a relief that it is working. However her nasal cavity still collapses on a daily basis, it is very audible. I'll never be able to explain this, so unless you have witnessed it, you probably have no clue what i'm talking about. And no, she has never had a PET or an MRS, just MRI.

Quinn has been exhausted lately. she LOOKS so worn out and has been sleeping a lot. She has dark circles under her eyes and she is pale. for some reason, she keeps getting these incredibly low grade fevers... like maybe 99 or 100 at most honestly, but they are just there and they go away. She also has cold sores on the sides of her mouth and one in the fold of her nose. I've been putting abriva on them, but one of the ones on the side of her mouth is huge and seems to keep growing. I'm ok with watching it for right now. I think it might be from the tape from the anesthesia last week.

I have actually blogged before about Quinn's issues with food. she LOVES to eat, but she just can't eat much or she will get a huge belly and scream to be vented. So the way we have been coping with this has been to just give her very tiny portions of pureed foods (usually only 2 meals and a snack) and she gets her very high cal tube feeding at 35ml/hr for 16 hours a day. this has been tolerable for right now, but she still is usually hungry no matter what. I rarely ever hear her tell me she is full. (if i never stopped ehr, she would probably eat until her stomach exploded and i'm honestly not kidding about that, she used to be suspect prader willi) anyway, she told me today that she was full and didn't want to eat anymore. Ok, imagine the shock i felt when she told me this. It was amazing. Either A) she is understanding the full feeling, finally or B) something is wrong... lol! I'm going to go with A for right now.

quinn has also had this cough for a long time, at least over amonth i know that, probably much longer. But I don't know what this cough is from. I thought it would go away, but it hasn't. To me, it TOTALLY sounds like a reflux cough because of how she reacts when this happens (lots and lots of swallowing, flaring nostriles and etc...), she also tells me that her throat hurts sometimes and that the frog is trying to get out (her description of retching) now, before I even start to imagine that it could be reflux, she just had a UGI like a month ago or so to see if she needed a pyloroplasty and we saw her barium just pile up on the wrap, but it never went past the fundo. if that thing wasn't there, she would have puked 30cc of the barium for sure. So based on that, the fundo is definitely intact. But still...

She is suppose to have her surgery for her Roux En Y separate J tube on the 19th. That's just 7 days away. We were told she would be inpatient for a minimum of four days but to expect a week. I just want her to be healthy for the surgery. I've decided to continue her oxygen for right now until we get the results of her pulse ox study because of the upcoming surgery. If we are lucky, we will be able to be out by Thanksgiving! it sucks that the surgeyr was scheduled so close to the holidays, which means we will probably have crap doctors and crap nursing  care, but we just need to get this done already. It's been dragging out for far too long and I just want my baby to feel better. We may even be able to start weaning one of her seizure meds if we can give them and they are better absorbed through the J.

Thanks for reading.. just a day in the life of Quinn. :)