Where to start?? Casey has had a
trach and has been using a vent since March of 1999. When we first used respiratory
support for Casey we started with a Negative Pressure Ventilator. He was about 8
months old. We had known that he had SMA type 1 since he was about 4 months old.
We were not very informed about SMA at the time. We were totally
clueless about the progression of the disease. I guess we knew the basic facts, but
didn't know that we had options and that we should have been fighting this disease before
he showed major weakness. Anyway, after winding up in the hospital for the second
time with respiratory distress, we finally came home with respiratory support and an NG
tube for feeding. On his 9th month birtday he got his permenant g-tube placed.
We used the Negative Pressure
Ventilator with success at first. What it does is remove the gravity from the
body/trunk so that the lungs have an easier time of working. The theory was great
and it did work for a while but as he got bigger we had to increase the settings and he
started spending more time in the vent. So we had done some research and ended up
with bipap. We used a combination of bipap and negative pressure when he was about a
year and a half old. That worked for a while also, but he would have periods of
distress where he would crash and need bagging and oxygen. It came to a point where
he was on oxygen all the time. Sometimes just the tiniest bit, but we know now that
it was a no-no. We were underventilating him and not expanding his lungs so we
really weren't helping him out.
So, there came a day in March of 1999,
that he had a bad crash. I think that the negative pressure caused his airway to
collapse so badly we had a hard time getting him back up. 911 was called.
Luckily, thank God, Gene was home, and he bagged him all the way down to the hospital with
his SATs going up and down. The rescue people knew us pretty well by this time, but
had no clue as to what we needed. So Casey was intubated. It was a tough
intubation. At one point when we were feeling okay about him coming off and
getting back to base-line, the tube came out. He crashed. They had a really,
really hard time getting in down again.
So we had to decide to trach or not.
It was easy for us to decide. When Casey felt good, he felt good! He
loved people and was funny and smart and it was his only chance, at the time. So we
We learned a lot. We were home
within a week. Once we got settled and used to all the equipment, Casey did great!
Now that he had the vent he could sit up and his breathing would not be
compromised. He loved it! At this point we got him a wheel chair instead of
his Panda (adapted stroller). We had a tray placed underneath it so we could
carry his vent (huge and heavy) plus his portable suction machine. We used to
keep him on the pulse/oximeter 24/7. Once we got used to the vent, and found how
stable he was, we stopped using it during his awake hours. We can tell by his face,
and the sounds of the vent if something is wrong.
There have been many changes to his
settings on his vent. Sometime I will go back and note what they were and why we
More to come...