ISOLATION

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!