Sunday, August 14, 2005


Max's VSD (hole in the heart) appears to be causing his liver some problems, so the cardiologist is reviewing the situation again tomorrow and possibly changing our course of action. However, they are encouraged that he has been able to gain weight despite his heart condition.

Tomorrow Max also has a hearing test. Last time his ear canals were too small so they were not able to complete the exam, but the initial news regarding his inner ear was promising. As you can imagine, I am quite anxious about this test and the results. Hearing loss (of different degrees) is prominent in nearly 90% of the children with CHARGE.

The ENT (ear, nose and throat) team is also checking in with Max tomorrow. They are trying to decide how long his nose stents should stay in place and how the nose situation will be handled once he goes home. There is always the danger of the nasal passages closing again and I want a clear course of action if that does happen and how I would know with enough advance warning. They are already training me on the suctioning and care of the nose....scary at first, but I am getting the hang of it!

So exciting to think of my beautiful baby coming home!!! The doctors are again discussing (of course this all depends on what the cardiologist and ENT doc think tomorrow of Max's progress) about him being transferred sometime next week to the "floor."

Please keep Max in your prayers tomorrow...he has a very busy and important day with a lot on the line. I am hopeful we receive great news about his hearing and that the doctors come up with an effective plan to temporarily deal with his heart failure.


rebecca said...

I will have nothing but positive thoughts today. My fingers and toes are crossed. Can't wait to hear what the doctors say. Hang in there!!!!!!


Heather said...

Wow, Children's is one amaing hospital! And Max, your mom probably didn't realize what an amaxing person she could be until you arrived! Our children make us be stronger, better, happier, sadder than we ever could have imagined being on our own.
Everyday we think of the two of you and everyday is one less day we have to wait to meet you!

Ruthie said...

The two of you have already proven what faith, love and hope can do. I have no doubts that you guys will continue to show how strong those qualities are in you.