Sunday, November 4, 2012

Post Surgery

It has been about three weeks since my baby has his Gtube surgery. That was a TOUGH surgery. They had trouble intibating him...due to his 'difficult' airway. He had massive trouble recovering. Edward spiked a temperature multiple times in recovery and his heart rate rose. They had to do extra tests and we had to stay an extra night. It was beyond stressful. I think I went into this surgery thinking that since we have been through this song and dance SIX times before that it will be just like the others. NOPE. Surgery will only get more difficult as Edward gets older. It is so emotionally exhausting and stressful. But just yesterday we actually started to use his Gtube. It has taken three weeks for him to get comfortable with his hole in his belly. (And me to wrap my brain around the ooze and the leakage from the hole in my babies belly....not an easy concept to be comfortable with.) I mean come on people. There is a hole in my 18 month old's belly. Not. o. k. His stomach was sewn to his already thin/non existent abdominal wall. Bla
Yesterday we had an eye appointment. Transferred care from Spokane to Seattle. Um, yeah, they think Edward won't even have binocular vision. And he needs to wear a patch for hours in the day to make sure his left eye can get back up to par. AND they mentioned that he might have some ear disease due to the way he holds his head and that it has been reported with other babies like Edward. JOY. That is exactly what I wanted to hear. We shall see though.
Next Wednesday Edward and I go to Bellevue to have a sleep study done. We stay over night and he gets hooked up to wires and monitors while he sleeps. Lord willing!, they will tell us that all he needs is  an oxygen mask at night to help him sleep. Lord Willing. After the sleep study we will have yet another round of appointments.
tired...waiting to see brother from surgery


edward entertaining himself while waiting for doc at recent appt

my awesome lion

my sweet loves

spongebob boys
Edward will hopefully be getting some specialized equipment to help him sit and walk! I am uber excited for that!
special chair


  1. Thank you for the update, J. I hope the g tube works exactly like it's supposed to in the weeks to come, and Edward gets the nutrients he needs. And I also pray you (and Adam and Harvey) get the support you need. Love you guys and that little miracle boy of yours.

  2. I'm so sorry surgery was scary like that.
    Love the pictures! Especially your little lion pictures. :)

  3. Hey girlie! How's the g-tube working out? I'm sure it will put the pounds on him in no time. :) FYI, I have chatted with a lady who has an 8 1/2 year old with a g-tube and she has some meal recipe ideas, in case you're interested. Here's some recipes others have used, along with calories...

    It might be something for you down the road, when you are more used to the tube and not so overwhelmed.

    I have mostly just tried liquids (breastmilk and formula) in C's g-tube. But one thing you might want to put in, would be some oil. Like olive oil or flaxseed oil. It will help with a)calories and b)that nagging constipation. You just cannot mix it with the milk/formula, because it separates and get's left in the bag. Anyway...... do whatever you will with that one. That was free. ;)