Monday, March 10, 2008

Looks like we'll be in hospital for a while

Hi all: We want to start by thanking my amazing sister Patti and our brother in law Dennis who spent a 3-day weekend here taking care of John, me, and Papa Joe (Dennis' dad) who is in his 90s.

It has been quite a demanding week and I have to admit feeling a bit overwhelmed and distressed with John's neurological symptoms from the radiation injury. Also, tomorrow he will have a bronchoscopy to check on the pneumonia spot they found on the right lung. On Wednesday, he will have tubes placed in his ears--the way they do them for kids--so they can make sure that the pressure in the hyperbaric oxygen chamber doesn't hurt his ears--apparently an issue for some people.

Today was Day 1 of the hyperbaric treatments. It was a very long day, but we were saved by Allison Orr's angelic visit around 1pm and she took over helping John so I could leave at 2pm. John and I had been picked up at 7am by the ambulance to go to Hermann Hospital's hyperbaric medicine department and he was delivered back home at 4pm. Pretty much all day, John was lying in stretcher and we ended up waiting for countless hours between the initial examination and the treatment at 1. The chamber itself is kind of cool looking--in a sort of mad scientist's retro-futuristic way. When the patients enter in their bright green scrubs, it's like they are going on board a submarine, and as the technicians turn up the pressure dials--they speak of going "under" so many feet of pressure. About 10 patients and 2 nurses went into the chamber this afternoon. There are 2 sessions a day--I think we will usually go in time for the 8am treatment. John couldn't describe anything about the feeling inside the chamber. Each of the patients had a large white breathing mask covering their entire head and they all looked like astronauts. Dr. Maus, the head of the unit, is very smart and personable. However, he was far more guarded than Drs. Forman and Andersson in his prediction of what the treatments could achieve for John.

John is still experiencing the neurological problems from before with a bit more confusion added to the mix. He wants and needs me to assist him with day to day living chores like eating, as his ataxia makes it hard to coordinate spoon to mouth. This can and will be worked on via occupational therapy sessions as well as physical therapy for the ataxia in walking. Basically, his walking has gotten more and more difficult so that really you'd have to say that functionally, he does not walk. As I am needing assistance to help John do some of these things, I contacted Jewish Family Services, as recommended by Hope Lipnick. I am looking into hiring someone to spend mornings riding with John for the hyperbaric treatments, so that I can work a bit and do personal errands.

We would really be delighted to see any of you in Houston as the doctors are revising their original plan to have us do a week here, a week as an outpatient at Rotary House, and then to Austin. It now looks like 3 or more weeks here at MD Anderson, as John requires so much rehab. Morgan Watkins plans to come visit on Thursday and Myles Slatin is coming in Sunday.

You are welcome for an hour or a week. If anyone wishes to stay overnight, I have a lovely large room at Rotary House with kitchenette that I never sleep in (just use it for clothes and shower) so you can just use the room anytime. You can email me or call Diane at 512 442-9400 to coordinate days. As you know we are always happy to see you, anytime, in ones, twos, or groups. John loves to see you, but also rests a lot so you'd be hanging out with a book or computer some of the time here. Also I might kidnap you to go out for lunch or dinner.

Thanks for the many months and years of support you have already given us! That will never be forgotten.

Love, Anna and John


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