UPDATE 9/24

Sorry for the wait but this week has been a very long week and very eventful in many ways. I received a call last Friday that Micheles feeding tube was not working and she was on her way to the Boulder Emergency room. Last minute struggles from work took me some time to get going but I made it to the hospital about the same time Michele did. Her feeding tube has been giving her trouble for the last 2 weeks and I felt this was going to happen. This is of course her second tube at this time and she and I have been through this already 4 months ago. Once she arrived at the hospital I asked for a long term solution and not a "Band-Aid" solution. This meant she needed an operation to replace her feeding tube. After several hours the doctors in charge of the procedure to fix it were not available over the weekend and it would have to wait. This is the story of our lives as we have yet to meet a doctor that actually works on the weekends or holidays. It appears that in less you are close to death the sick do not get coverage on the weekends or holidays.

Well enough of my complaining, Michele got her feeding tube cleared on Friday and we were out of the ER and back to the Manor. By Sunday her feeding tube was cloging again and Monday found me calling the doctors to find that she could only get a visit with a doctor in 2 weeks. Tuesday morning I got the call again that she was cloged and off we went again to the emergency room and this time it was for good. We were not able to unclog this time and she needed a new tube inserted. After a long 10 hour day her tube was inserted and I am happy to say she is back at the Manor and well.

This recent experience was very difficult for Michele and the family as we tried so hard to do what was right for her to only hit a brick wall at every turn we made. I felt that she truely had no medical doctor that cared for her well being and she only got pushed aside for the appropriate time. This has occured several times over the last 8 months and it is very frustrating.

Last night was probably the most wonderful time I have spent with Michele in the past year. I got a call that she was going to have a shower and I rushed to the Manor to help. Once I was there I worked hard to get her ready and off we went to the shower. Michele was ready and willing to participate and she held her bowl of soapy water while I washed her. Once back to the room I got her nestled in her bed and began to speak to her as I usually do but last night she was very interactive. It is hard to explain but she was Michele! She challenged me during conversation using her hands in sign and really showed interest in everything I said and did. She gave me a big hug and rubed MY arm and back and conforted me while I was expressing my feelings to her. We talked about what she needs to do and what her medical concerns are and she acted like she was going to take it all on and overcome her challlanges. It was like we were having a conversation but without her speaking. I knew what she was thinking and she of course knew what I was saying to her.

I have a bathing suit at the Manor for when I help Michele shower and last night when Michele was back in bed I began to change from my suit to my jeans. While trying to do this quickly before a nurse came in the room, jumping up and down like a kid putting on my jeans with wet feet made Michele laugh. It was so nice to see her laugh and apparently all the staff and family now know about my "strip tease" and it is the talk of the Manor. I told everyone I will only do it for my wife though so dont look for it on Utube yet. Last night by far was the most amazing I have seen her respond and it made my night.

The pictures below are right before her operation to replace her feeding tube. She was a trooper all day even though she was unable to have any meds since her feeding tube was cloged. She just struggled through 10 hours of discomfort and pain and barely made any complaints. She truely is the strongest woman I know.

John