I guess it's my turn to write.
Steve is ok. It's just that it takes him so
long to type that he gives up. He has emailed several friends this past week.
Short notes that took him the better part of the day.
We have had several
new developments.
We finally were able to get a hospital bed. Medicare is
strict especially when you have an honest doctor. The bed is not for the
convenience of the caregiver but for the need of the patient.
The other
development is what qualifies him to get the bed.
In the later stages of
MSA a problem develops with breathing while sleeping. It is called Nocturnal
Laryngeal Stridor.
What is happening is that his larynx cannot close and
open correctly
(partial paralysis) and the air gets trapped going in with a
wheezing sound and then bursts out with a graspy sound. Seems that it is a
common occurrence with MSA. Soooo, nighttime is not fun. The second I hear him
start making an odd noise I wake him up. This happens about 5 times a night.
Oddly, there are some nights that it doesn't happen at all.
We are
waiting for a scheduling of a sleep study to be done at the hospital. The
doctor prefers this than a sleep clinic because of Steve's medical
issues.
His supra pubic catheter is working out very well. A nurse comes
to change it every 3 weeks rather than 4 because for some reason his bladder
makes tons of grit that clogs the tube.
Bowel issues: Let's not go
there. I give him prunes and juice, miralax, docolax, liters of water, fruits
and veggies, and still he has a hard time. His brain may send the message but
his body is not receiving it.
It's kinda like when I talk and he doesn't
listen. Chuckle!
