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.

                     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 overnight.

                     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.

We started the neb treatment on the 2^nd extensive hospital stay.  Jimmy receives the neb treatment 4 times a day.

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.

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!