Thursday, August 18, 2005


Last night was such a crazy night. I maybe got an hour of sleep...monitors beeping, alarms sounding, babies crying...yikes. I was jumping out of bed every ten minutes checking on Max and trying to do his care. However, as wild as it was wonderful to be in the same room together!

Today was just as exhausting though! I am trying to do a lot of Max's care on my own and between that, pumping and meeting with Max's medical specialists, there is really no time to even sit down. We have two wonderful friends coming in town this week so I will head home to Bellingham for a day...and that will be a nice "day off" to relax and regroup. It will be much needed!

Today a pulmonary doctor has joined Max's medical team...I don't think there are any specialties yet not involved with Max!!! As they said in rounds this morning, Max is quite "complicated." I added..."and very cute!" :) They are thinking that he has more prevalent lung disease (preemie issue) than expected and that is contributing to his labored breathing and need for oxygen support. I am meeting again with the doctor in a few minutes and they'll let me know the course of action.

They took him off of one of his new heart meds that was causing him issues with his blood pressure and heart rate, so the cardiologist is also coming up with a new plan for his heart.

And regarding his hearing, he is having a more intense screening tomorrow we should know more about that situation soon.

Lastly, I met again with his craniofacial doctor today...he will be following Max in upcoming years as we go to clinics, etc. He is a wonderful man who is so great about answering all of my questions and understanding my many, many concerns. He has had experience with many other CHARGE children and I think he will prove to be an invaluable resource.

I know there was more that happened today but my brain is about fried. Keeping my fingers crossed about my upcoming meeting and also for tonight's sleep!

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