Wednesday, August 17, 2005

MEDICAL UPDATE

Monday was a very big day for Maxwell with many appointments...

First, the cardiologist evaluated him and while they are happy with his weight gain, the heart failure is taking its toll on other areas of the body. So they added yet another medicine and keeping a close eye on his blood pressure, heart rate, etc. But they are definitely very pleased that he has been able to gain weight. The dietician and doctors have really been working on this and have him on a VERY high calorie diet and so far Max is tolerating it well (with a few "toots" here and there!).

Second, the nose continues to be a struggle and I am meeting again with the ENT team tomorrow to decide what to do next. I have talked with another parent of a CHARGE child (a beautiful three year old girl - hi Renae and Cassidy if you are reading this!) who also has choanal atresia...and I am learning it can be an intense battle to keep the nose open and quite challenging to manage at home. Quite frustrating and scary as you can imagine. Perhaps one day Cassidy and Maxwell will be hanging out as teenagers and stick straws up their noses to be funny and remember the good ol' days of nose stents, suctioning, surgeries...

Last but not least, the hearing test did not go as well as planned. I can't even admit to myself yet about the possibility of him not being able to hear...perhaps I'm somewhat still in denial or perhaps it is mother's intuition. There will be followup tests that will give us a better understanding of exactly what is going on. I told the resident tonight that Max and I won't leave the ICU (a "sit in" if you will!) until we have a thorough plan on studying the ear situation.

Another day on this crazy roller coaster ride...very emotional and fairly disappointing. And yet today it is officially decided he can leave the ICU. Up, down, up, down, up, down...roller coaster ride indeed.

4 comments:

Suzanne Holman said...

Amy, it is an exciting thought to think of you and Max sleeping in the same room!
Lots of love from Grammy

rebecca said...

What a great sense of humor you have - you always make me laugh. I am so excited to hear he is able to move down a floor. Baby steps but huge ones at that. Please let me know if there is anything I can do to make your room feel more like home! Griffin and I will color some pictures for your walls (just want you wanted right???). Hang in there - I hope to visit soon.

Rebecca

Elizabeth said...

I'm so excited to get to see Max's new room tomorrow! Thomas can't stop talking about it either! So incredibly proud of you Amy and what an amazing advocate you are for lil' Max! He is so blessed to have you as his mama, and we are all so blessed to have him in our lives. Love you both! Elizabeth

carlytee said...

Amy, so happy to hear about Max's new room. Thanks for sharing all the news. Elke and I are always thinking about you guys. And let us know what we can do for Max's room too! We'd love to help decorate!

Carly & Elke