HEART UPDATE / HEARING TEST

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.