NOT FEELING WELL

Poor little Max is not feeling well and has been coughing all day with lots of congestion. His oxygen needs increased dramatically today too, which is discouraging. They are going to run some tests on him in the morning.

I met tonight with the pulmonary specialist...and we discussed the different short and long term options for Mr. Max. Max is proving to be very confusing for everyone right now and we are just waiting for him to show us one way or the other what he needs.

There are so many decisions to be made...and as the only "involved" parent, it is resting all on my shoulders. That is really hard and quite frustrating! I want to make sure every decision is perfect for Maxwell...and as much as I love my family and friends, it's not the same as a fellow parent who would share in the decision making. Such odd timing for a divorce! I have had many mothers in the hospital say there is no way they could do this without their husband...but what else can I do??? This is the situation we are in, and I'm determined to provide the love of not only two parents...but a million more! Max deserves no less.

On a lighter note, Max and I took a brief nap together today...it was so cute to stare at each other while we dozed off! Actually he dozed and I continued to stare at his gorgeous angelic face...and listen to his sad little coughs!

That happened all night too...and I have a feeling we are in for a repeat again tonight. So sad to see him struggle! He already has such a small airway that any congestion really makes it hard for him to breathe.

Lastly, I am happy to report that the medical team has responded VERY well to my concerns about lack of organization. We are meeting together tomorrow to discuss our future plans. They really are an incredible group of men and women so dedicated to Max's health...it's amazing. I just want to make sure he is ALWAYS on the forefront of their mind...coming up with great ideas and incredible solutions!!! :) THANK YOU CHILDREN'S HOSPITAL!!!

Off to bed...hope Max is able to sleep peacefully and comfortably and feels better VERY soon!