I don't know.
We took Will to see Dr Johnson (ENT). He looked in Will's ears. He performed a hearing test. Yep. Normal. Um, so how do you explain the transient hearing loss, ear pressure, tinnitis, and headaches? Well, Dr Johnson thinks that Will's sodium levels spike after an infusion (it is saline after all and he is on medication that causes him to retain sodium), and the fluid builds up in the mechanisms of the ear and muffles the hearing.
Except that Will's sodium levels remain on the low end of normal. We don't have a post perfusion sodium level, but we do have them only a few days apart and the number is rock solid. Three tests. Almost identical results.
Dr Johnson (ENT) recommended slowing the rate of infusion down (give the fluids over a longer period of time). The prescription calls for two liters over four hours. Last Saturday's infusion took 5 1/2 because it was gravity fed. Well, the nurse can't change the order, so today's infusion was four hours. So I guess we'll see tomorrow whether we have issues or not.
Dr Teasley returned my call this afternoon. We're adding a new med to Will's regime to try to sustain the blood pressure. His heart rate is finally stabilizing, but now his bp is unstable. She thinks his body is just compensating...not a great sign. She called Dr Cohen's office (Cleveland Clinic...where we are scheduled to go in Dec), and apparently his wife is gravely ill and they won't see us any sooner. She recommended finding another specialist and she would happily refer us to wherever we decide. A message did come across the mito forum that a family called every day to see if there was a cancellation and they got in this week. So guess what I'm gonna do every day??? Dr Teasley is referring us to a neuro-ENT specialist at MCV to re-evaluate the hearing issue. Not sure when that will be...
So, as a recap...we just don't know. We get to add a doctor (neuro-ENT), we get to locate another doctor (mito specialist if we can't get to Cleveland), and we pray that things do not continue to deteriorate...esp the hearing.
I asked Will today how many days a week he didn't feel well. His answer? "Are we talking my version of feel well or yours?"
Hmmm..."What IS your definition of don't feel well?"
His answer, "Not having pain more than a 2, not being more tired than a 5, not feeling awful in general."
And how many days a week is that?
His answer, "About half."
"So, by normal standards how many?"
His answer, "None."
Ugh. I just hate that answer. I just want him to be a little boy...the goofy boy that coudn't sit still during school so I finally gave him an exercise ball for a chair. The crazy kid who was always bouncing off the wall, climbing a tree, or redefining mischief. The rambunctious, silly, boy who always smiled. You don't realize what a gift that child is until he disappears into a tired, exhausted, grumpy, I-don't_feel-well, can I just sleep? kind of child who knows the pain scale, what his "normal" blood pressure is, when his heart rate is above 85 without bothering to take his pulse, and knows the medical jargon of a fourth year medical student.
As much as I want a cave and a blanket and a piece of chocolate, I think he needs it more than I do. If only it were that easy.