Well, after a premature birth 14 weeks ago and 3 surgeries later, my son came home Monday. Things here have been very hectic learning to take care of his feeding tube and his inability to swallow.
The doctors say he has Pierre-Robin Malformation Sequence. Basically, his jaw did not develop properly during early gestation and caused his tongue not to drop down. He does not have the cleft palate normally found with this sequence. His palate is closed, but just barely and extremely high up. Because of this, he has no real suck/swallow reflex and a very diminshed gag reflex.
He had a surgery early on to move his chin/jaw forward so the tongue would not push back on his airway, and had a feeding tube inserted in his abdomen so he can feed. He also has obstructive sleep apnea (like his father) and is on a monitor 24/7 for breathing and heart rate right now. We are probably looking at several more surgeries, but the doctors have not decided how many or when yet.
As you can guess, all of this does not come cheap. Basically, I'm busy playing "ignore the bill collectors calls" while I try to catch up on the bills, but it sure isn't easy right now. I've had to go and do the paperwork to raid my old 457 plan retirment fund of the $2k left over when the county switched plans so I can try to get caught up on utilities and such.
So I am pretty stressed out right now. In fact, I've been getting stress migraines a lot. I'm trying not to let my wife know how bad it is affecting me because she is pretty stressed out too and she is still post-partum and does not need the extra anxeity.
I'm glad to have him home, but the stress sure does not end with that. Sorry, not meaning to rant, just needed to vent a little I guess...
Michael
The doctors say he has Pierre-Robin Malformation Sequence. Basically, his jaw did not develop properly during early gestation and caused his tongue not to drop down. He does not have the cleft palate normally found with this sequence. His palate is closed, but just barely and extremely high up. Because of this, he has no real suck/swallow reflex and a very diminshed gag reflex.
He had a surgery early on to move his chin/jaw forward so the tongue would not push back on his airway, and had a feeding tube inserted in his abdomen so he can feed. He also has obstructive sleep apnea (like his father) and is on a monitor 24/7 for breathing and heart rate right now. We are probably looking at several more surgeries, but the doctors have not decided how many or when yet.
As you can guess, all of this does not come cheap. Basically, I'm busy playing "ignore the bill collectors calls" while I try to catch up on the bills, but it sure isn't easy right now. I've had to go and do the paperwork to raid my old 457 plan retirment fund of the $2k left over when the county switched plans so I can try to get caught up on utilities and such.
So I am pretty stressed out right now. In fact, I've been getting stress migraines a lot. I'm trying not to let my wife know how bad it is affecting me because she is pretty stressed out too and she is still post-partum and does not need the extra anxeity.
I'm glad to have him home, but the stress sure does not end with that. Sorry, not meaning to rant, just needed to vent a little I guess...
Michael