Son came home Monday.

Discussion in 'Getting Started' started by McFortner, Oct 28, 2006.

  1. McFortner

    McFortner Member

    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...

  2. Illus

    Illus Member

    Hang in there Michael, all will sort itself out. It may take some time, but it will. Congrats on him coming home. I myself have a 3 week old son, and I can't imagine the stress you are going thru. Every noise he makes, and I am standing over his cradle staring at him...
  3. Ralph

    Ralph's for fun!

    Vent away Michael as this is a safe and supportive place. Best wishes to your son and you and your wife as you face these challenges.
  4. CCT70

    CCT70 Member

    Hang in there Michael, money comes and goes, but a little life is precious.

    Besides, he's here now. :)

    Congratulations on your little boy.
  5. shaygetz

    shaygetz Active Member

    Spent six months of sleepless nights with those sleep apnia monitors myself. Wired my little girl up every night like a little bionic bunny then chocked her to sleep sideways like she was a truck tire. Only served to make me a real Daddy and not just a well as a better'll make it. It took us seven years but she's paid for, too.:thumb:
  6. Jim Krause

    Jim Krause Active Member

    It sure seems that we get overwhelmed sometimes in this thing we call life. Hang in there. You may think you're out there on the limb by yourself but many of us can share your feelings. My prayers are with you and your family.
  7. jeffrey-wimberl

    jeffrey-wimberl Active Member

    Michael, I have a pretty good idea of what kind of stress you're under right now. I'm single, no kids. I had spinal meningitis when I was 2 years old. That was in 1962. It left me with severe nerve damage that I've had to live with all my life, but through hard work and a lot of determination, I was able to lead pretty much a normal life until 5 years ago when diabetes did it's dirty work and left me disabled and unable to work. I have to get along on $603 a month. That has to pay the bills for the car insurance, the electricity, groceries, loan payments (which are almost paid off, thank God!), medical bills, special equipment which enables me to walk without crutches or a walker, though I do have to use a cane, and a host of other bills which I'm slowly getting paid off. Some months I don't know how I'm going to get through and the stress almost becomes too much to bear. If it wasn't for my relatives supporting me while I was laid low in a near coma, I don't know how I would have made it. Hang in there. Your son has a great father and a great family. The doctors will do all they can so your son can lead a normal life. Hang in there man.
  8. N Gauger

    N Gauger 1:20.3 Train Addict

    Michael.... This is how it works :) You take care of your family.... Your Son and Wife :) :)

    You've been a member here for 4 years - you have done a LOT for The gauge... and now, we're here for you!! :)

    Vent - away My Friend.... We're here for you :)

    May God bless, and take care of you all!!! :D
  9. Herc Driver

    Herc Driver Active Member

    You're never venting when you're talking to say what you need to say, when you need to say it. It's good to just get it out. I know, I've been there dealing with major problems with a new baby. And you're not alone. Keep praying, keep believing. God Bless you and your family....and you, your wife and little one will be in my prayers.
  10. TrainNut

    TrainNut Ditat Deus

    Very well said. Find comfort in knowing that you and your family are in our prayers as well. What's his name? Please keep us updated whenever you can.
  11. ezdays

    ezdays Out AZ way

    A good place to vent, among friends...

    We wish the best for your son and your family. You are all in our prayers.
  12. interurban

    interurban Active Member

    Vent away friend, we here are pulling for you all.
    You guys have been through a lot, Praying that things will work out for the better soon.

    To see your child hurting is the worse thing to go through.
  13. Clerk

    Clerk Active Member

    I also have sleep apnea and the associated equipment. Only I am a mouth breather when I sleep and have to have the full face mask which I have deficulity with because of tender head caused by shingles I had several months ago.
    Will be praying for your son, you and your wife. Hang in there. I know what it is like fending off bill collectors.

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