(simple. pure. serenity. home.)(The view from my parent's front yard)
Serenity is not freedom from the storm, but peace amid the storm...
What a super mad-busy day we had today. We arrived at the hospital at 11 a.m. and didn't leave until 3:40 p.m. and all this so she could have 2 doctor's appointments, an x-ray, and labs. I ended up canceling PT in order to accomplish all this so that was sorta a bummer as Alana had been looking forward to getting into the water.
Tomorrow McDr will call with the results of all that hub-bub and let us know if anything needs to be looked at further. We did the usual CRP, Sed rate, CBC, etc. but also added profiles for lactate, pyruvate, glucose, and a couple of other mito specific markers (for lack of a better word). Her x-ray was iffy to me. The streaking looked better and I didn't see anything that screamed bad, but I did see a lot of hazy areas. The side angle the whole lung looks hazy, but who knows when it comes to Alana's lungs.
Last night we, Larry & I, had a meeting with McDr to make sure we are all on the same page with Alana and how she's being cared for, what the thoughts on her immediate future are, and just all those things that I don't like to think about. It wasn't much in the way of surprises. She has dramatically progressed in the not a good way manner. She has many systems involved that cannot be ignored or even put on the back burner anymore, and yada-yada. It was hard to talk about, hard to hear in black and white but much needed. McDr has some hopes for starting her on the mito cocktail but is waiting to do so until she hears back from the doc's in Cincy (because she needs to see if they want to see Alana "as is" or with a powerhouse of vitamins on board that *could* change things). She did tell us though that if we didn't advocate for Alana as much as we have and keep things as good for her as we have she'd been in a very, very bad way, more so than she already is. She did tell us that she worries each time Alana get's sick now that it's going to be the one that she doesn't recover from. Her baseline changes each time she get's sick and we can never seem to get it back to where it was before. Like I said, nothing we already didn't know or see happening but to hear them laid down like that sucks.
So here's all this talk about mito...I am sure you didn't notice at all right? I am going to try and explain this as good as I can so here goes. The full reports on the muscle biopsy came back a bit ago and it showed things that are consistent with mitochondrial disease, somewhat. Dr. H in Seattle wanted to run another round of testing and 1 thing came back better, 2 came back the same as the original testing. So clear-cut answer? Of freakin' course not. So again, where does that leave things? It leaves them like everything else...confusing. So what we are doing now is that Alana is participating in a mitochondrial testing study that's going on at Seattle Childrens. I mentioned that Dr. H asked permission to include her when we were down there, but now she's in it to win it. The testing is looking for unknown (as of now) variants of mito in children who test borderline or atypical with traditional methods but clearly present with mito. Sooooo--based on all this, from what we know now it appears that Alana has an unknown variant of mitochondrial dysfunction. No one yet is willing to make that "official" call on her paperwork because once it's there, it is THERE but she is now being treated as such. I know that it's hard to understand how it can be and not be at the same time, but I think it boils down to this: Alana presents like a typical mitochondrial patient. She has progressed at an alarming rate over the last 2 years and is continuing to progress. She has multiple systems involved and new systems joining the party at a frightening clip. Nothing else has ever fit her like this does.
Larry and I had started to come to terms with this when the first round of testing came back a few months ago. When the rest started to come back and more talking was done and more thinking back to the start of this and how things have gone we started to come to a scary realization that this might be it. Now we are waiting for them to do what they always do--tell us it's not it. That sadly has not happened yet.
I think that's enough to digest for tonight. As always there's been more fun around here then a barrel of monkeys could provide but I'll give you a hint..Alana was chewing on her O2 tubing, it was yanked on by accident and because her teeth are weak and have no enamel on them to keep them OK, a tooth came out with said cord. Talked to the dentist and from her x-ray a month or so back dentist said, yep, that tooth had another good year before it was suppose to come out but it should be fine, she will be toothless there for an extra long time now.
Weeeeee!! Can I get off this ride now?
PS: On Friday Alana goes in for a change from this long tube to a Mic-Key button and also a brain MRI (don't ask). Will post after she's in.
(she's so a pissy teenager sometimes)