Saturday, September 14, 2013

Post 68 - My Turn

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!