Home, holidays and new challenges

Hello and Happy New Year to all!

We've had quite a bit of activity since my last update. After my last post, Ed continued to move forward and was discharged to come home November 29 after 74 really long days in the hospital. We were glad to have him home, but it was a really tough transition. He struggled to make the mental transition from hospital to home; as such we all had to work hard to keep him moving forward and doing all the things required as part of daily life. Then, there's all the "nursing" I took on! Ed came home on over 20 medications as well as IV nutrition (TPN) since he still isn't eating enough. Some of you might think I'm absolutely nuts to add "nurse" to my list of "hats", but when faced with a situation like this our family just rolls up the sleeves and gets it done - there is no other choice! We had a really nice Christmas together. Ed was having a good day and the kids were really
excited about Santa!

About the 4th week at home, instead of improving, Ed's condition actually began to deteriorate. We tried everything we could think of to motivate him to move, eat and participate in daily life; but nothing worked. On Jan 2 I made a very difficult decision - it was clear Ed couldn't be home and needed intensive rehabilitation. Our little team at home could no longer manage his care. The next day I talked with Ed about my decision, but in the course of our conversation, I also noticed he seemed to be having difficulty focusing on our conversation and even remembering details I had just told him moments earlier. Something else was clearly happening. I talked to his team at Karmanos and together we decided that instead of waiting 2 weeks to consult with a team from the inpatient rehabilitation center, we'd bring him back to the BMT unit, do a full workup and get him back on track. Thank God we made that decision quickly as Ed's downward spiral was rapid and scary - when we took him to the hospital Jan 5, he barely had the strength to stand on his own and was having trouble talking. Blood tests quickly revealed that Ed had contracted 2 Bacterial infections - both can cause the extreme fatigue he'd been experiencing as well as the issues with his mental status. The good news is that these infections can be treated with IV antibiotics and after 5 days of treatment, Ed's status is steadily improving day over day.

Of course, nothing is easy with this journey, so in addition to the infections, the doctor's have also identified a problem with Ed's liver. He has a "pseudo-aneurysm" in a vein on his liver. The fix for this is similar to the procedure they might do for a brain aneurysm - they insert a wire with coil into the vein to prop up the vein walls and clear the aneurysm. That procedure is scheduled for tomorrow morning and we're optimistic that it will clear up this latest problem.

So, what's in store next? Well, if nothing new happens, I think Ed will be in the hospital a few weeks to recuperate and regain some strength from these latest challenges. Besides the quick improvement we've seen from his being on antibiotics, Ed has also been doing better by eating more, having less nausea and just overall improving. So, again we're optimistic. Once he's medically ready to leave the BMT unit, we'll be looking to have him transition into an inpatient rehab facility. During the time he had at home, it became really clear that Ed needs intensive physical rehab in order to function at home. The neuropathy he experienced prior to his transplant really left him quite debilitated and that's been compounded with the steroid therapy he's received to deal with his GVH - unfortunately, use of high dose steroids has a price in that it causes severe muscle weakness and wasting. We're not sure how much Ed will be able to recover from a physical standpoint, but we need to do all we can to help him move the ball forward!

So, we're optimistic for a new start in 2011. We know that tomorrow will be better! Stay tuned for more updates. My new year's resolution is to get the update out a little sooner next time! :-)

We leave you with love and highest hopes!

The Thorps