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.
Thanks for the update.
God be with you and Jeff.
Progress will be slow, but it will continue.
Dear Gail,
I’m so happy to hear that Jeff is continuing to recover well. I think about, and pray for both of you very often. I’m thrilled that you are happy with the level of care he is receiving as well. That’s really important - it helps so much... Thank you for the updates. May God continue to watch over both of you.
God Bless,
LR
God Bless you all...continuing prayers.
Continued prayers here.
We miss Jeff and hope he’s able to be back on FR soon.
Prayers for Jeff’s continued recovery.
Thanks for the update Gail. We are thinking about you both.
MD Anderson is the best! 46 years ago, My Dad was treated there for colon cancer and his case was used as part of the study to prove that it is hereditary. He lasted another 40 years living until in his 80’s. Prayers for Jeff!
I would not recommend you and him making the trip back home alone in a vehicle though.
Knowing the distance from where you are to Boise, I would second this motion, and look toward air ambulance which would have bed or chair available and be much quicker, thought I’m sure more expensive. Expense is somewhat relative under the circumstances, and is something that could be shared. Then the issue would be getting your vehicle home, which could also be shared by team drivers along the route, doing 100, 200, or more miles and giving the vehicle to the next freeper team along the route. Each team would foot the bill for fuel on their leg of the journey, providing a service to you, and allowing you to travel with Jeff.
I do have a question on the tilt bed. It sounds like a fairly long term need, unless the BP and other issues I’m not aware of go away quickly. Will you need one back home?
But a tilting seat Power Chair wheelchair or scooter might make him more comfortable when sitting up. The tilting chair also helps to shift weight as you sit and relieve pressure on any given area and thus reducing the chance for pressure sores.
The reciprocating air mattress is the cheapest thing mentioned and easiest to rent and is used for the bed at home. It has compartments in it which in about a 5 minute cycle deflate and inflate. There's at least two different tubes or compartments and as one inflates the other deflates. These are mainly used to lessen the chance for pressure sores.
If a hospital bed is needed at home they can be rented at most home health supply companies or bought fairly reasonable for about $150 at thrift stores.
I can tell you how to make the bed at home more comfy. Have someone place the legs on the head of the bed on cinder blocks. Then you can put pillows between the top mattress and the box springs. I puts you in an inclined position. I did this to our queen size bed. Much more comfortable than any hospital bed.
I read Jeff’s “Dragons Fury” book last year for the first time and it was awesome. If we ever wish to live in an America that did the things portrayed in that book we all have work to do. The use of nuclear pulse detonation for rocket travel is an idea that originated in the 1950s and Jeff used extremely well in the book.
Somebody needs to add Jeff’s book to the Wikipedia page listing books referencing nuclear pulse propulsion
http://en.wikipedia.org/wiki/List_of_stories_featuring_nuclear_pulse_propulsion
Highly recommended.
http://www.dragonsfuryseries.com/
Get well Jeff.
Hi Jeff
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To: jeff_head@yahoo.com
I don’t know if you will get this message or not. I don’t have Gail’s email(though I am guessing at it in this message).
But I did some checking and with some Freepers help, we found out that there is an organization called corporateangelnetwork.com that flies cancer patients to and from MD Anderson(and other hospitals). I called them just to get some basic info and they said that Gail should contact them when you are two or three weeks away from wanting to go home. Corporate planes/pilots let good people like yourself ride on their planes for no charge, if they have room.
It brought tears to my eyes that there are kind and generous folks like that who are so giving. I’m sure they are Conservatives!
The number is 866 328-1313
Another possibility that I didn’t check on is a Texas based company.
Their number is 972 458-0700.
A third is angelflights.com. I spoke with a man named Doug there who gave me the above two numbers. I hope that you and your family don’t mind that I looked into this for you. I figured that you are busy getting well and that Gail has her hands full too.
So I’m just trying to help. Hope you are continuing to get better and that you will be back on FR soon.
Oh and one of the Freepers said that he would help get your truck back to Idaho for you..He knows a trucker who could get it to Kalispell, Mt. from the Co/Wyoming border,,,if someone could get it that far. Blessings on you and your family, your friend, Mountain Mary
Hello Gail, I check now and then to see if there is any news about Jeff. I know you are all busy helping Jeff.
I sure hope he is recovering well.
I am sure I am not the only Freeper who thinks of Jeff and wishes him well.
God Bless your whole family, TheConservativeParty
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Continued prayers for Jeff and yourself.
Jeff is in my prayers every day.
Thanks for the update.
Prayers.
Lord be with him!
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