A lot has happened since his supra pubic catheter was inserted on May 10, which by the way is a lot easier to deal with than constant self catherization.
Two days after he was home from the hospital he developed a severe fecal impaction. I won't go into details. He may in the future. That wiped him out, literally and physically. Now, a week later he developed a fever and UTI. The high fever has rendered him incapable of picking himself up from the bed or chair, even with my help. He cannot keep himself upright and tilts to the side making it dangerous to be in a chair.
I think we are at a crossroads. I can hope that when his fever subsides his strength will return, but I have my doubts.
A nurse and an aide are coming today. I'm hoping they will evaluate the situation and give this information to our doctor. I will be speaking with him next week to see what our next step is.
I have realized that I no longer have the strength or ability to help Steve properly and I don't want to see him fall on my account. Whether this means a hospital bed and more home health care I don't know. We will see.
Meanwhile we will be celebrating our 48th anniversary on June 12th. If we can't go out to a nice restaurant, I will just bring something in and enjoy our day together.
My thoughts and prayers are with you and steve.
ReplyDeleteLee Reed
Hello Steve and Fran,
ReplyDeleteYou are very brave to come up with a blog and keeping it running for so long. Fran, I must appreciate your efforts all along, you seem very strong. I hope you had a good anniversary.
My father suffers from MSA as well (C Type). I understand how difficult it is to see your loved ones suffer through such horrible disease. It's been 7 years, now he's bed-ridden and has tracheotomy done. Also, he uses a silicon (urinary) catheter. It's really difficult but I have never seen him lose hope. This in turn gives us hope and we are hopeful that someday there shall be a cure.
I see that Steve is a little far behind from where my father is now, maybe 2 years or less. There are some tips that may help him in slowing down the symptoms. I could not go through the blog from end to end but I assume Steve could still eat orally i.e he does not need a ryle's tube (feeding tube). So it is high time you focus on his diet.
Stop milk and other dairy products completely or avoid them as much as possible. Use Soya milk instead and extra virgin coconut oil for cooking. Get him a physiotherapist, very very important because there are chances that patients suffer from spasm in muscles.
I am sorry, I cannot type more right now. If you need any information regarding the same, please feel free to mail me at - akashdwivedi1987@gmail.com.
Give my regards to Steve and be positive :).
Akash