Gabe had 2 doctor appoitnments last week. Here's how they went:
Pulmonary: Gabe's sleep study showed that he has both central and obstructive apnea. The obstructive apnea has greatly improved, but is still there. It is very positive though that he is growing out of it. ENT may be consulted in the future to see if he needs to have any surgery to widen his airway by taking out retnoids/adnoids, or doing tongue thining, but for now, he just wants to watch it and let him continue to grow and get stronger. Gabe originally had 27 obstructive episodes per hour when his airway was swollen from his reflux. After extubation from heart surgery, he had 17 episodes per hour. The past study showed 8 obstructive episodes per hour which is consistent with moderate apnea. I'm so glad it keeps improving.
He also has central apnea. Central is when your brain forgets to tell your body to breathe. The Pulmonologist thinks that Gabe is doing this because he was so use to having low oxygen levels the 3 months he was in heart failure, he built up a pretty high tolerance for 85% oxygenation. Because he has this high tolerance, he pauses his breathing in his sleep till his oxygen levels get in the mid 90's and then takes a breath. This pausing is preventing him from staying in REM and "waking him up" every 2 minutes. We have to retrain Gabe's brain to know that 100% is normal oxygenation and he should breathe more and not settle for 96%. In order to do this, we are continuing on with the oxygen at night and going up from 0.12L to 0.25L of oxygen to ensure he is always 99 or 100%. Another sleep study will be repeated in July.
Opthalmology: Gabe has nastigmus (sp?). This is when your eyes kind of rattle back and forth. There are a bunch of different types. Gabe has the kind that is often associated with Down Syndrome and goes along with low tone. It's mild and there is nothing that they want to do about it. Gabe is also slightly far sighted, but most babies his age are. Everything looked good and they are going to do another checkup in 4 months.
Feeding can still be a little discouraging since Gabe likes to spit his food back at us, but we keep staying hopefull. I'm also trying to get Gabe into PT soon. All the appointments, plus therapy, plus working 32 hours a week keeps me busy busy!