Neurology and Rheumatology

So going backwards a couple days here. Neurology was, well neurology. If you've ever been to one you know what I mean. They can be very vague at best. They are keeping her in the "probable mitochondrial" category. What this means is they want us to continue to treat her as such and use all the precautions and get her back on the vitamin cocktail. This should overall help her energy and possibly help her as a whole. We had done it short term before but it's complicated, it's rather expensive (2k a month) and insurance does not cover it. When we get home I'm going to try and look into grants to help cover it. Most of neurology was spent going over management and how to help what she has going on. 

Today was a meeting with a special PT that then referred us to a special OT that has now been added onto Fridays schedule. After learning a lot of information we met with the rheumatologist and she was great, even after we spent 5 hours there. She went over a lot of stuff including her thoughts with management and how to improve that. She did say that she's going to meet up with us Thursday and give us a better idea of her complete thoughts. She was with us that we need everyone's 2cents in this and then come up with a unified plan of attack to help her manage, prevent, and improve her quality of life. We need someone to take the lead but we are still trying to weed out who that is going to be. Gentics wants immunology and immunology wants Gentics etc. it needs to be someone though but GI, genetics, and immunology need to be in the lead and working together in my opinion. There's now so many solid players on the board that I'd be hard pressed to pick just one. 

I know lately I haven't been giving in depth details but that's temporary. We have learned a lot but I need to get as much information as possible together before I can figure out how to explain it properly and how it's going to change things and make things different for her and us. We do have one solid diagnosis (new), her orbital ones (dysautonomia, lung disease, etc.), her "working" diagnosis of mitochondrial dysfunction, and now 2 more that they are actively saying are problems but they need to wait for these last test results to come in. 

It frustrates me to no end to think about how many doctors we've seen who've never picked up on things. I know when I spoke with Dr. Mc about it the day we found out down here (have I mentioned I adore her! She is on vacation but gave her personal cell so if something exciting came up we could call right away and let her know) that she was flabbergasted. There was the "what!" and "why didn't I look at that!" but to me this isn't her area. This is truly a specialist area and one of these other yahoos from Seattle shoulda seen this. I know I'm on a bit of a tangent and I apologize, sorta. 

Bouncing ahead, tomorrow starts the longest and toughest part of our journey here. She will be admitted in the a.m. for a massive clean out. She will not be allowed to eat or drink anything after midnight tonight and will only be receiving fluids through her CVL. On Wednesday she will be taking to the OR and endoscopy, colonoscopy, and the probes placed and hooked to the computers. From there she cannot get out of bed at all. For anything and she still cannot eat or drink. On Thursday mid day she will be allowed to eat for 30 minuets while they watch on the monitors what her stomach and guts do. After that the probes will be removed and then she will transfer over to have another sleep study done which will conclude Friday morning. After that is the OT appointment and then with any luck, we will be allowed to leave campus without having to return until next time. 

All in all she has handled this amazingly well. I wish I could take credit for all this but I can't. This has truly been a team effort and I mean from everyone. Family, friends, crossovers (like Tom & Gez who are both family and worker bees for Alana, Tamara, etc) and everyone who holds her, Shaylin, and Noelani near and dear snd makes sure that they know it. Every prayer, thought, kind word, and unconditional love that is cast upon them matters more than I could ever express. Thank you, thank. You so very much. 

(Yes this was just his dinner and the plate is bigger then him)