Normal vaginal birth 3 ˝ weeks early
with SMA – Type I:
After EMG & positive DNA testing
|G-Tube Placed:||August 20, 2002|
As a proactive response to the future, we had a g-tube placed. We were told that when the children get weaker they might experience problems going under anesthesia. Jimmy was still eating orally when we scheduled the procedure. We opted not to get the Nissan (tying of the top of the stomach) at the time. Not every child experiences reflux. So he may not need it and it was a more complicated procedure. In hind’s sight, we wish we had gone ahead with it. Jimmy slowly started decreasing in his feeds around the time he had the g-tube placed. We started supplemental feeding through the feeding pump at night. Jimmy started taking fruits in September. He slowly lost his swallow and gag reflux through October and November. In mid-November he no longer was taking any feeds orally.
|C-Pap & Cough Machine Introduced:||November 2002|
In November, we were admitted to the hospital for rapid
breathing. They put the
Bi-Pap on Jimmy. We were
horrified. We had heard
about it but never saw it. Jimmy
hated it. He whimpered the
entire night. He couldn’t
get his thumb in his mouth, which is the only comforting thing he is
able to do for himself. The
next morning his eye was swollen shut from the pressure.
We asked if there was anything besides the triangle mask.
They put him on nasal prongs and switched him over to C-Pap.
He was much happier and so were we.
He began C-Pap at a setting of 7 on room air for 12 hours
Cough machine came into play this visit also. The doctor explained that it was like therapy for the lungs. SMA children are unable to take a deep breath to expand their lungs so this did it for them. I am not going to lie, the cough machine not a comfortable treatment. It blows air into your lungs through your mouth & nose and then pulls it back out. I tried it on myself and it is not a good feeling. Fortunately, Jimmy forgets about it as soon as it’s over and goes back to his happy disposition. We started out with 3 sets of 5 at 30 inhale 30 exhale pressure 3 times per day. In January 2003, we were instructed to do it every 4 hours.
Zantac – 3 x per day
Bethanical – 4 times per day
Reglane – 4 times per day
Prilosec – 2 times per day
|Neb Treatments started:||January 2003|
We started the neb treatment on the 2nd extensive hospital stay. Jimmy receives the neb treatment 4 times a day.
|Amino Acid Based Diet Started:||February 2003|
We used 2 packs of vivonex (never more than 2) and add pear juice for added calories, extra water and some calcium, vitamins, etc. This diet has done wonders for Jimmy. His sweat episodes went away immediately his heart rate dropped considerably and after a couple months regained a little more movement.
|G-J Tube:||February 2003|
Jimmy began refluxing his feeds. We had a terrible incident and he needed to be bagged in order to keep him breathing. He was already heavily medicated for the reflux so our only options were Nissan (tying of the top of the stomach) which is a surgery or having his g-tube swapped for a g-j tube. The Nissan was out of the question because we said we were not putting him through a surgery. The G-J tube took 10 minutes to switch without any medication and he did not even cry – that’s our boy!
|Jimmy was very sick and needed more support than the bi-pap could give him. He was intubated to help him get better. During his intubation, I researched via other SMA families the pros and cons of having Jimmy trached. I felt in Jimmy’s case, the pros far outweighed the cons. I couldn’t be happier with the decision. Jimmy’s quality of life definitely improved. Respiratory-wise he is so much more stable. Managing an illness from home is so much easier (and less frequent). His cough treatments are less invasive and less frequent. He no longer has to look beyond his mask to see. He is able to tolerate higher positions. We are also able to see his handsome face 24/7!|