Next Game Plan

Next Game Plan.

I spent a lot of time making phone calls and juggling between doctors and scheduling and making new game plans yesterday. Here’s what we’ve managed to come up with.

Dr. Teasley (Neurologist that specialized in Mito), has a lot of concerns with Annabelle’s case. In many ways she believes this is Mitochondrial Disease and it’s progressing rapidly, and on the other hand she said it could be completely unrelated. If this is Mito – Point Blank / Un-sugarcoated.. the only way we’re literally going to have a chance at saving her LIFE is to get a diagnosis asap and begin the treatment available to support and protect the areas of the body that are not already damaged. Finding a diagnosis is hard, painful, and very lengthy. Especially by doing it outpatient. If Annabelle were inpatient, we would be able to begin the tests rapidly and move on. However, we need something solid to go on beside all we have tangible – Irregular bloodwork, Odd Growth, Temperature Fluctuations. Dr. Teasley and her team, along with my Pediatrician spent the entire day yesterday trying to get Annabelle admitted into MCV – they were unsuccessful. The MCV ER records did not state that Annabelle arrived into the ER unconscious – only disoriented but not unconscious (true.. but she was disoriented bc she was literally waking up. They never witnessed another episode). We need to get Annabelle admitted ASAP and that is all our goals.

So here’s our plan.

Today Pediatric Neurology will be contacting me to setup an appointment so I can at least have something to show that I am on the books with Dr. Teasley with the MCV Health System.

I do have an appointment today already scheduled with Endocrinology to meet with Dr. Frances, although he is with St. Mary’s, our appointment with at least be documented and I can collect another MD’s perspective on this bizarre case Annabelle is showing us. To be honest, I don’t have much faith in this appointment, Endocrine is going to be most focused in her growth issues and temperature fluctuation – I believe we are past that and something deeper is going on to cause these issues, but hey, it’s worth a shot. Im not a doctor and I welcome all professionals opinion at this point.

Wednesday Dr. Young, our pediatrician is going to be at the office all day by herself. I am planning on working half a day and then packing Annabelle’s things and moving myself into her waiting room. We will document every temperature fluctuation. Seizure. Erratic behavior. Falling spells. Everything. And each and every time Annabelle does something or her temperature begins to fluctuate at home, I’m bringing her into the office. With enough documented episodes by her doctors at the pediatricians office, we should be able to get admitted sooner vs. later. It’s so sad we’re having to go this route to get help for Annabelle.. but we’ll do whatever it takes. And if this nonsense is what it takes. So be it.

Annabelle has been doing……… well, she’s just been doing lately. Her pain at night has come back. She wakes up all thru the night screaming, thrashing around, hysterical in pain.. then sobs herself back to sleep before waking up soon later to begin it all over again. It’s heartbreaking, and exhausting for all of us. During the day she is doing alright – her appetite is back but comes and goes. She isn’t eating as much as we would like, but somehow has gained almost 6-7lb while barely eating. I have no idea where the weight is coming from and it scares me.. I don’t know if it’s water weight or what it is. She is getting puffier, I do know that. Two pair of shoes I have tried putting on her, won’t even fit because her feet are so swollen. It’s odd. All this is odd.

We need answers. I feel like they’re on their way. Pray pray, and wish us luck. I’ll keep you all updated.

Much Love.