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Hi Dolly, A bit late but here is a heads up to post by Jeff on this thread [1756] and an update by Gail on another thread.

Posted on Wednesday, June 09, 2010 9:26:43 AM by Gail_Head

I didn’t get my update on date posted Sunday night...sorry. I went home and went to bed at 9:30 pm. Jeff has been doing physical and occupational therapy every day this week (one morning and one afternoon) which wipes him out physically, but he is feeling pretty good. Last week he had a fever every evening for 3 days, then we had to wear face masks for two days, then he got a bowel infection and is now on contact isolation, so we have to wear these paper gowns and gloves while we’re in the room. I guess the bowel infection is pretty common in people who stay in the hospital over a couple of weeks and are on anti-biotics...they kill off the good bacteria along with the bad and you get diahrea (kind of goes along with the yeast infection). There is a bright spot in all of this...the bowel management training is coming along nicely. It will still be another week or so before his body figures it out, but there is improvement.

On the rehab side, they did a CT scan on Monday and it looks like his bone graft is growing (yeah!!). He is getting a lot better on the tilt table. He has to be able to sustain a position at 90 degrees before he can try taking a step. He has been at 70+ degrees for extended periods of time and even got up to 82 degrees for five minutes...but then he blacked out so he hasn’t been that high again yet. At the lower levels his blood pressure stabilizes pretty good, but the muscle and bone pain are kind of high. His muscles have atrophied enough that it is painful to stretch them out. Plus, he doesn’t have a lot of strength to support his weight yet. He is a LOT better than a week ago, but the goal of getting to take a step is probably a few more days out. He is moving to a different kind of bed today. It has air instead of water and sand which will give him a more stable surface so he can work on his muscles, flex, etc. when in bed. The one he is in now makes it almost impossible to do any kind of leg lifts, especially when he’s on his stomach.

I have to take a minute and give some kudos to the doctors, nurses, and staff at MD Anderson. They are great! I don’t know what we would have done if we had gone anywhere else. Everyone is patient and understanding of Jeff’s condition. For Jeff, it has been very humbling and he struggles sometimes with the TOTAL lack of privacy in ALL things, but the people at Anderson have always been encouraging and never demeaning in any way.

Jeff is in good spirits most of the time. In fact, he may even make a post himself in the coming days. He is down to only one drain in his back...we are so excited to have the last one gone, but it looks like it will stay for a few more days at least. We anticipate Jeff being in the hospital another 2 or 3 weeks. After he is discharged, we will stay in town for a week or two while he aclimates to life in the “real” world. We’re also rethinking our original plans to drive home in his truck because we met another chordoma patient who had a sacrectomy last November (not as comprehensive as Jeff’s but still major) and HE wasn’t able to fit comfortably in his SUV so they ended up riding home to New Mexico in a friend’s motor home. I’m not sure we will be able to do a motor home, but renting a van and putting him on an air mattress might be an option.

Thanks to everyone for their continued prayers and support. The doctors have been amazed at how well Jeff’s incisions have healed, so I know the prayers are being answered.

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