Update

Mike's still in the hospital but may be home tomorrow. They have tried different treatments for the headaches saying to him, "You've tried all the things that work best for most patients". We're aware! There will be more tests tomorrow and Mike is still waiting to hear about a tumor test they did last week. He's had a couple units of insulin due to high blood sugar (this is new), but in the last 48 hours his blood sugar has been fine. They have him eating a diabetic diet and when I went grocery shopping tonight, I paid close attention to carbs. We don't need to throw diabetes into the mix! The doctors ruled out the heart infection and have told Mike he needs to have 2, maybe 3 more surgeries. One will be nasal surgery to clean out the cartilage and remove and biopsy the cysts that have grown post surgery. We knew about this one. The second is a cyst removal on the back of Mike's head. He has had several cysts growing on the back of his head that no dr has been concerned about, but this team thinks Mike should have it removed in case it is a source of hormones. Lastly, it is so unclear what the pituitary is doing - no tumor but not working well and spots that looked "abnormal" during surgery and a biopsy that showed evidence of inflammation. Should the neurosurgeon go back in and remove more of the pituitary? Will this alleviate pressure? Will it shed more light on what is wrong with the pituitary? Is this worth more brain surgery??
Just thought I'd update ya!

Over the river and through downtown, to University Hospital we go . . .

Mike has been to the ER twice in the last 5 days and spent all of Tuesday afternoon in the endocrinologist’s office. It seems his body is slowly but surely getting worse, endocrinically-speaking (I made that term up). Mike’s blood sugar is slowly creeping up and trips to the hospital have been for headaches so severe he is vomiting and hefty spikes in fevers. The neurosurgeon asked Mike to go to the ER last night fearful of meningitis, which Mike does not have (he’s had that test . . . shocking, I know). We are thankful he does not have this. During our trip to downtown UC last night, we met Dr. John. Now this is confession time. In April, when Mike had his gall bladder removed, I developed a slight “crush”, if you will, on Mike’s surgeon. He was the first doctor in a very long time that took Mike’s symptoms seriously, went after them aggressively and helped Mike to feel better (despite tests results that showed everything was fine – you’ll remember Mike’s gall bladder, upon removal, was very infected despite negative test results). I developed a slight “admiration” that day, and last night was “admiration” number two. This is boding fine for marriage, don’t you worry. Mike’s fully aware of my crushes for these doctors who are a breath of fresh air, who sit and listen, who think outside the box, and who are willing to put Mike’s quality of life concerns above impending appointments and ER-filled rooms. Tonight, Dr. John spent some amazing time taking through all of Mike’s three-year medical history, asking questions as we told our story. It was cathartic for someone to listen, truly listen. Turns out Dr. John is the chief of staff – imagine the chief of staff spending extensive time in an ER patient’s room and truly caring about them! At the end of the evening, Mike was admitted to rule out a possible heart infection. Yes, this is new. I will know more as the day progresses and will update you.
Bless you, longsuffering friends, who have not forgotten us in your own sufferings. We are eternally grateful.
Becka

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.