Gabe has been ill so I haven’t posted for a while. He
had close to 300 seizures in October. Fortunately most of them were mild (still
hell for him). After he got the kidney stones out that were causing the AD they
put him on an antibiotic. It was the wrong antibiotic and he got a raging UTI.
After they got the right antibiotic and increased seizure meds things are
calming down and he is starting to recover. God he is strong and deserves great
admiration. He is the teacher that we all love. In other words he is a kick ass
man.
I wanted to share some info on Gabe’s bowel program. In
addition to the motility problems and irritable bowel from his SCI he also has
a partial bowel blockage and a lot of scare tissue. If he uses anything orally
it always caused problems. Once or twice a year he uses Mag citrate to blow
everything out. If he uses a biscodyl suppository it irritates the bowel and
causes bowel spasms so he uses a 30cc biscodyl enema (special order from
pharmacy) and if he has problems later in the day and feels like he needs to
have a BM he uses a saline enema. We were told at the beginning that bowel care
should take place after a meal because chewing will start the whole digestive
process. Gabe also has a visceral massage to his abdomen right after a meal and
right before bowel care. He sees a PT occasionally to supervise the massage. We
have videos and a diagram for staff to follow. This was prescribed by a doctor
that practices regular and alternative medicine. When we told the other docs
about it, they said they had heard of it but never thought to suggest it and
thought it was a great idea. Gabe has a lot of problems with gas buildup as
well as bowel spasms so we tried everything out there for gas. None of it
worked. So we decided to go natural and Gabe uses CharcoCaps and digestive
enzymes. Also, now that the AD, UTI, seizure storm has ended we are now
going to try something new that the GI doc suggested. He said almost all people
with slow motility and irritable bowel will eventually develop an over growth
of bacteria in the stomach and small bowel. So he is suggesting that Gabe go on
antibiotics one week a month. The antibiotic is the same one used for travelers
who get the bowel bug. Apparently, it’s molecule is too large to pass
into the blood stream and will only affect the bowel.
Gabe receives a very basic RT program from his aides 2x day (spirometer
and resistance breathing). We are all trained in PAP and it is very helpful to
catch before congestion gets too bad or when it is bad. Anyone who can beat on
a drum can beat on your back, sides and chest when you’re laying down.
They just need to use cupped hands. We have difficulty with the quad cough and
try with little success. Gabe has pap very regularly to get rid of anything
that attempts to stick around.
Gabe has a syrinx right at the site of his injury C-4-5.His
injury site is very diffuse I guess because it was a stroke. The Neurosurgeon
said he would strongly recommend against a shunt. We have a lot of experience
with shunts because Gabe has had a Ventricular shunt since he was 6 weeks old. It
has been revised (replaced) about 14 times. Because of his condition he has
always been observed for a syrinx. The children I know who were shunted. They
were children with spina bifida or related conditions did not do well.
I found an article on central pain and while it may only
offer information on how they are now redefining CP it is a good read. I
believe it helps to know what category your injury fits into and may help you
get better care. You can find it at PainOnline.com. The specific article is at
painonline.com/mt-archives/2004/08mayo_clinic_per.html.
As usual I ramble on.
Best to all of you.
Lana
Gabe’s mom
32 years old, 10 years post, C 4-5
