confusion central

I don’t even know where to begin . . . . where did I leave you? . . . . we were waiting for results on Mike’s hypothalamus. The results came back “suspect”. What the heck does that mean??? I don’t even know. We have had so many opinions and so many potential diagnosis and haven’t a clue where to go from here. I’ll try to simplify all of it – wish me luck!

Mike continues to feel lousy and very tired – “zapped” is his word. His fevers have been over 104 and he was vomiting last week. His headaches remain bad. The endocrinologist has told us that we will not know if Mike has cancer of the pituitary until it metastasizes . . . . because Mike’s blood levels are WAY out of whack, his hypothalamus looks suspect and his recent MRI of the pituitary looks suspect, we are not really sure where to go from here. The steroids went back up (which is very disappointing to us as he’s been on such a high dose for 3 yrs) to compensate with the endocrine levels. We are still contemplating the testosterone injections as his testosterone level is off the charts low. The endocrinologist wants to push the steroids and has said the adrenals will never work again; the neurosurgeon has said that Mike’s adrenals will work again and all this may be post-surgery effect. Today the ENT surgeon said we should consider having another surgery to clean out cartilage and cysts that are forming in the sinuses post surgery. He told us that he has only had to “go back in” to do this surgery on one other patient – of course Mike falls in this category! Durkee! It would be one day, out patient, and no brain involved! Mike’s primary care ordered another panel of bloodwork to look at Mike’s endocrine levels. We are waiting for those results. Mike’s primary care also ordered a CT scan of his adrenal glands because they have stopped working (the guy should glow in the dark he’s been so radiated!). The PC is questioning a syndrome that is attacking his immune system (can’t remember the name and there is no definitive test for it). Mike’s blood sugar keeps increasing and this is another concern and another reason to question this syndrome.
I can’t even keep track of the number of opinions and dr appointments and tests and results and LACK of conclusions. Sigh . . . BIG sigh. We are debating about pursuing the NIH. The NIH takes hard to diagnose cases, but we have no idea if they will take Mike. He was rejected a couple years ago. Here is our plan: increase the steroids, wait for a month or so to see if Mike’s body recoups if this is all post surgery nonsense, pursue a headache specialist in that time if the headaches persist, consider having the second surgery in the sinuses and pray about the NIH. . . oh yes, and breathe.

On a personal note, I went to see my dear friend last week in the hospital to celebrate the birth of her new baby boy. I was thrilled to love on that baby and celebrate in their joy and saddened at the same time. Mike couldn’t come because he felt lousy, and that’s what bothers me most– I miss him, I miss us, I miss making plans to do fun things because we never know how he’ll feel.
We feel . . . .defeated, confused, stuck and tired of living life sick. We also feel loved, supported and thankful for God’s grace through all this.