Wednesday, August 31, 2005


Today Max and I are officially in "ISOLATION" so everyone has to wear gowns and masks in our room. Pretty strange feeling...reminds me of the movie E.T., which atleast brings a smile to my face. :)

They think he has a respiratory infection...actually I (with my medical degree and all - ha ha!) somewhat diagnosed him first and sure enough they agreed once I brought it to their attention. While nurses and doctors are wonderful, I am quickly learning that you really have to be an aggressive advocate because symptoms are overlooked and mistakes are made. It's quite frustrating at times, but I must remember that no one is perfect and medicine is not an exact science.

This week we have had major issues with keeping his nasal stents clear and he's struggling to breathe...and yesterday it seemed to get worse. Additionally he has thrown up several times, which then throws his "OD tube" (his feeding tube that goes to his intestines) out of whack and we have to get an Xray to make sure the tube is in the right place. Yikes! Never thought I would be so excited for him to have the g tube surgery (where they insert a device to allow us to feed him directly to his little tummy through a "belly plug") but I am now pushing the doctors to make it happen sooner than later. Unfortunately he still is too small. They are estimating (they know I LOVE my "estimates") that could happen in a month or so. Until then, we struggle daily to keep the tube in the right place. If it moves to his stomach, his reflux causes him to throw up and then it could possibly get into his little lungs. Sounds frustrating, doesn't it?

Illness is hard enough on a "normal" child at home, but it really hits you hard in the hospital when you have so many other more serious issues. And this complicates his already labored breathing due to his "chronic lung disease" and "congestive heart failure." Boy, do I hate those definitions. I always grimace when the doctors refer to those and say "can we not just say lung and heart issues?" Oh well! I'm getting a thicker skin but you never want to hear those conditions associated with your tiny baby!

We will get more information as the day progresses. Thanks everyone for your kind emails and calls the past few days...greatly appreciated. I tell Max all the time about all his friends and family who are praying for him every day. He can't wait to meet everyone someday!


Elizabeth said...

Max...we're hoping you're feeling better soon! We are so excited for you to come home so we can love on you every single day!
Love, Jim, Elizabeth, Jackson and Thomas

Bennett said...

I just wanted to let you know that you and Max are always in my thoughts. Hopefully a trip can be made out there to see my nephews soon. Until then take care.
- With love, Bennett

carlytee said...

Amy & Max...Elke and I wanted to make sure you both know that you are in our thoughts & prayers everyday. Max, we can't wait to meet you and we hope you are feeling better really soon! Take care.
lots of love, C & E

Dylan (and Kristy) said...


Hope you are feeling better soon. Give Mommy a hug for us.

Kristy, Ray, and Dylan

tessa said...

maxwell, you are one amazing little boy. I hope you get better very soon so i can plan another trip down to seattle to see your beautiful face. tell your mommy hello for me...and tell her just how much we all love her.... take care are one amazing woman! I am thinking about you and maxwell always...
much love

Kirstin said...

Hi Max - I wanted to drop a line and let you know I have been thinking about you. I enjoy keeping up on your days through your site. Your Mommy does a nice job on it. Make sure you tell her thanks! You are doing a wonderful job of getting better - keep it up!I can't wait to meet you in person.
Lots of love - Kirstin

Heather said...

Brady is going to work on some art to send your way Max! Hope you feel better soon, colds are no fun, especially for little guys like you! Boys don't have time for colds!
Love Heather Brady and Natalie