Friday, August 17, 2012

Summer, Surgey and Support

This summer Bob has made it his business to be as involved in our church as much as he can. He has been a helper in the children's bible study classes. He isn't able to teach the lessons but he can read the scripture and participate in the conversation, somehow the kids just soak in every word he says. It was quiet enough to hear a pin drop when he was reading and this was in a room full of 22 5th and 6th graders - no wiggles either!

We also as you have seen in a previous post gone to Ashland, Oregon and rode the Hiawatha trail in Montana on the 4th of July, and aquired a van. We are planning to go to Port Townsend for the Wooden Boat Festival and maybe to Calif for my HS reunion. So the summer has been busy but along with all this busyness has come some health issues.

In the middle of July we had our fisrt heatwave of the year and we weren't prepared for the effects of it. Up til now he has been fairly resilliant regarding heat but this year he beame ill, also our AC was not functioning properly, and we wound up in the ER with dehydration and other complications - no big deal but definitely a cautionary experience. So we got home and were hydrating and trying to keep him cool and his gall bladder went south.

Bob has a high pain tolerance- always has- but I think the disease also helps block the pain receptors to an extent, at least so that what he calls an 8 we would call a 16 pain level. So when he says he has pain I need to pay attention. Granted he is always in some kind of pain and it can get old and I can get desensitized to it, but when he really starts to complain I need to not dismiss it so quickly as it could be VERY Important.

I took him in on a Thursday evening and by 2am Fri they admitted him and he had surgery by about 1pm. The doctor said it was just about the worst gall bladder he had ever seen and they kept him for 4 days. Even then he was still in pretty bad shape and the first few days at home were very intimidatuing for me. It was also a wake up call as we are not really prepared for what he will need as his disease progresses. Our home is not handicapped freindly and we are going to have to make changes if we wish to be able to continue living here. A ramp, a hospital bed, remodeling the bathroom, rearranging the living room to make room for wheelchair accesability and so on. As quickly as the gall bladder came up and upended our lives who knows what else will come along, how quickly and how unprepared we will be for that? So now is the time to make the changes, now before we desperately need it and trying to find a solution in a time of stress is overwhelming case in point----

We live on the secound floor. There are stairs on the inside from the office to the apartment. There are stairs on the outside from the ground floor to the private entrance to the apartment. These stairs are both narrow and one has a turn. We also have access to a locked parking lot behind us that is at the same level as the apartment - however there are 4 steps, a landing and a step up to croos th threshold into the apartment.

That's the setting. I had him transported home from the hospital by ambulance and we arranged a Wheelchair Specialty transport back to the Dr for a post op. I can not believe that I had an argument with the "Services" people. They actually count how many steps they are allowed to transport the pt up. I wanted to yell at the that if it was easy I would not have called them. I will refrain from posting all the drama that ensued, suffice it to say this was not, I repeat not, the time to have to have these conversations, I was absolutely wiped out by all the stress of his surgery, going back and forth to the hospital, working ect ect ect.... They are so lucky they all still live. So for our sanity, safety, spiritual witness and future dealing with "Services" we will have to make changes now. And these changes are in the making as we speak.

What I have discovered is all the amazing support Bob and I have. The Church has been great, people have visited, others have donated supplies, a dear young man came and spent an evening with Bob so I could go and  produce a skit for VBS. Alexander is a high schooler, he made sure Bob was served his food and they hung out together, dualing laptops, watchng old Roy Rogers serials and visiting. He's such a cool kid. I also found a blog that I am working my way through reading the last two years worth of posts.

I googled Christian caregiving and found a blog from a woman who is writing to caregiviers after the death of her husband. As I read her posts I discovered that her husband also had MSA. Wow! I really appreciate reading her posts they are a comfort and a blessing to read. She is one of the few people who truly knows what I am going through and what is ahead for Bob and I. I can't help but think that this may be one of the most valuable tools I have found to date. Thank you God for leading me to it.

The Blog Christian caregiving is listed on the sidebar- pleas go and read it, especially my fellow MSA caregivers. She is so kind, caring and a thoughtful writer, her words will bless you.

And that's our summer vacation and how we have spent it - Have a great Fall!