Friday, April 15, 2011

A Few Quick and Important Updates!

A few changes have happened in the past 24 hours, and we wanted to keep everyone in the loop:

We've confirmed that acid reflux is at the root of Sam's problems. First, as Jason mentioned yesterday, the impedance study showed that Sam does experience acid reflux frequently, and the swallow study from last week suggested that Sam is aspirating his reflux, which is the likely culprit of Sam's desaturations. Also, for the past 24 hours, Sam has been receiving food in a way that eliminates the possibility of acid reflux, and he has been a happy camper with very stable oxygen levels. It has been nice and calm around here.

Soooo...Sam is definitely going to get a G tube and a Nissen fundiplication. His surgery is scheduled for this Monday at 4:45, and while I'm not thrilled about Sam having to undergo a second surgery, I understand now why it's so important for him to have this surgery. To prepare ourselves, Jason and I attempted to watch a video yesterday on G-tube care. It was quite possibly the most boring video ever made.

Here's some good news: We have just completed a "room air" test, and Sam passed it! This means that as of right now, he no longer has a nasal canula (it's that horrible plastic thing up his nose). Receiving no supplementary oxygen or airflow, Sam appears to be able to maintain his oxygen saturations just fine. Well done, little wolfman!

Other good news: Sam has been checked out by occupational therapy and physical therapy, and he's hitting his milestones--eye contact, reflexes, neck strength, and tone are all good! This is something we've been a little worried about because kids who spend the first month and half of their lives lying in a hospital often have developmental delays. Sam will continue to have occupational, physical, and speech therapy every week for at least the first 6 months of his life to keep him on track. Take that, Kaiser.

Jason is still working on his theory that Sam is in fact a baby genius. He's been trying to convince the nurses of this for weeks now, and our nurse Kellie today did have to admit that Sam has the uncanny ability to pee right on her during every single diaper change. She said that no other baby has ever peed on her quite this much. She didn't seem super excited about it.

Right now, Jason is showing Sam a golf DVD for kids. Seriously. I'm not kidding. It's called "Better Golf for Kids," and he checked it out from the hospital's volunteer office. Sam seems more interested in staring at Sheepie.

On a personal note, I have finally given in to the fact that I live here, and I've made peace with it. I typically know at least one person in the elevator each time I'm on it, and I have a regular spot in the cafeteria where I like to have my morning oatmeal. When either Jason or I leave to grab lunch or go for a run, the other one asks, "When do you think you'll be home?" "Home" being the 9th floor of the hospital. Doctors and I refer to each other by our first names, and I know every single nurse, clinical assistant, and physician's assistant in this place. It kind of reminds me how I missed home when I first went to Camp Friendship in the 7th grade, but once I realized there was no escape, I actually enjoyed sleeping in a bug-infested cabin, spending my afternoons making key chains, and singing songs in rounds before every lukewarm cafeteria meal. Don't get me wrong--I can't wait to get out of here (hopefully in a week or so), but I think I've found a livable schedule here.

As always, thank you for reading, and now I'm going to go enjoy a homemade meal with my friend Lisa.

P.S. Naysh--If you're reading this, I hope you and Pete have a wonderful, wonderful wedding this weekend in Hong Kong, and I'm giving you a big hug long distance.


  1. Yea for real air...even at altitude, way to go wolfie, once again BA!! I'm also glad to hear that Sam the Man will get PT, OT and Speech you may as well be sure to suck Kaiser of all its resources :) And you will probably enjoy having some adult contact during the day once you are home :)

    However, on a more serious note, Anne has meals planned for you guys for a couple if you go home too soon you may not be able to enjoy the goodness of everyone's cooking :) Totally kidding! Hopefully we will soon be able to deliver those meals to Palomino Park!

  2. You don't meant the Camp Friendship in Minnesota do you? Cause I totally worked there in college.
    Glad to hear what't going on with Sam. Glad to hear so much good news.

  3. Yay for Sam! Well done, little man ... you're getting there!
    Very happy to hear the good news :))
    I totally understand that another operation is scary, but when it helps ...

    Praying all will continue to go well!

  4. Yay for air! Praying for you all.

  5. do you sit with the cool kids in the cafeteria???? wait, you ARE the cool kid! love u xoxoxo

  6. Tammi T. (mom of an HLHS boy)April 16, 2011 at 6:34 PM

    Thanks for letting us know the date of the nissen fundiplication. We will be praying. I know it is scary but it helped our Daniel and I'm sure it will help you get to your "real home" sooner.

  7. Best of luck to the little wolf-man tomorrow during surgery. We will be praying/pulling for him (and his momma and pops). Keep us posted.