Posted on 06/09/2010 9:26:43 AM PDT 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.
Prayers continue....
Consideration/experience: After 2 months in a Seattle hospital due to significant heart surgery (3 entries into my chest), suffering a stroke during the first surgery and contracting MRSA that almost took me out, I set out to go home.
I rode passenger, on the very comfortable leather seat, in our new Tundra.... it doesn’t ride like a truck. My bride drove and did her absolute best to help with my comfort. I was on O2, morphine, oxys, was plumbed for tube feeding at my abdomen, a PIC for antibiotics. and a wound vac tube in the open wound of my chest... that’s the short list of my issues at that point.
The drive took about 4 hours. Every mile was very painful. Every bump, every change in the road surface, every lane change, every stop and start, every acceleration and deceleration was extremely painful and miserable. We had to stop no less than 10 times as I was on diuretics and needed to use a urinal. I’m thankful that I never had to have a bowel movement... I couldn’t walk more that 10’ and it two people to help me get in and out of the truck... very slowly.
If I had to do it all over again, I think I might have preferred a van, but while prone, I wouldn’t have been able to see the road conditions and traffic, that allowed me to anticipate some of the changes which allowed me ‘some’ occasional relief. I can’t help but think that I would have weathered the trip much better had I been in a cushy motor-home.
It doesn’t take long for the morphine to wear off and the oxy’s were never enough..... sleeping through it was impossible.
Good luck...
Dan
May the lord continue to bless both you and Jeff. He is so fortunate to have a wife who loves him so much, and to have a god who loves him even more.
Jeff is such an amazing person, and he has more work to do on this Earth. I will continue to keep you and the rest of your family in my prayers daily.
Continuing to pray.
Thanks for the update.
Good news indeed!
Glad to hear of Jeff’s progress, little by little, day by day.
“Blessed be the Lord, day by day!”
Prayers for Jeff, You, and the family.
“You could pick up a used twin mattress on Craiglist for very little.”
What? And bring home Texas-size bedbugs?
God bless you, Gator.
All you FReepers are my heroes.
I’ve never found so much courage all in one place.
Thank you for your kind words, but my wife took off work and spent every day at my bedside reminding me of a reason to survive... she is the real hero and one of great courage. I guess that hanging out with her for 38 years paid off. LOL
Yuck. Two things to never buy used - underwear and mattresses.
Quadriplegia means all for limbs affected and para means two. It does not necessarily mean complete loss either and can mean incomplete or partial loss whether temporary of permanent. This seems to be true especially with severe spinal issues. I remember that part from my wife's spinal rehab 25 years ago. Inner Ear is part of what controls your balance. It can also affect mood and trigger such things as anxiety.
I missed the transportation issue. There is very likely a handicapped van rental company near by. Most vans now are mini vans with cut down or lowered floor boards. A RV brings several issues including steps he may not be up to climbing. A wheelchair accessible van if he is able to transfer to say a Captains Chair would be the most comfortable & practical. Lieing down while riding might cause motion sickness issues. You might have to rent it and pay someone to drive it back or there may be a national rental company in the area of the hospital and all you would have to do is drive it to a major city for return. If he can’t transfer at that point you might have to try and locate a used wheelchair with Tilt back capacity. I would not recommend you and him making the trip back home alone in a vehicle though.
Always evaluate the source of anything you buy second hand, that you can’t thoroughly inspect for potential problems — mattresses, computers, whatever. But people living in a decent neighborhood who are having a moving sale and selling their mattresses probably haven’t been sleeping on a bedbug-infested mattress. If they seem to be scratching a lot and/or covered with sores, take a pass just in case.
But seriously, better to risk bed bugs than to risk a recent bone graft getting jolted apart by a bad bump in the road. A lot of the bed bug hysteria is trumped up the mattress industry — yes, sometimes mattresses do get invaded by bed bugs, but it’s much less common than the mattress industry wants you to believe.
Oh, this is such good news. Our prayers are with you. Keep up the good work. CTR forever.
More prayers.
Prayers for stength and recovery.
Gail & Jeff-
I’m still amazed at your faith and resilience, both physically and emotionally. Your strength in this endeavor is an example to us all, and we continue to pray for your full recovery every day. May God continue to bless you and your family.
Sincerely, JC
thank you for giving all of us who are praying for your husband such a good report. We keep you both wrapped in our prayers. GOD BLESS.
GS, I was only kidding...trying to make Gail laugh.
:)
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