Tuesday

We are still in the PICU due to elevated CO2 levels. The BPAP is helping Leah sleep soundly, but is not helping lower the CO2 level. At this point, they are accepting that this is the norm for Leah’s body, possibly caused by the slowing of respiratory signals from the brain stem. They will likely keep her a few more days for observation. Then, we will follow up with pulminology.

I believe they will move us to the fifth floor for in patient rehab. This will allow them to keep an eye on her CO2 levels, and we will probably have a sleep study next week.

They suspect the episode on Thursday was due to CO2 build up in her lungs. This was caused by a combination of factors: radiation, stopping steroids and Avastin (low dose chemo), and immobility due to her broken leg. She is back on steroids and Avastin, and we hope this will heal and protect the brainstem. She had her first dose of Avastin today and did well.

Denver agrees with Akron Children’s evaluation of the most recent MRI changes- damage to good tissue caused by the radiation. Regardless of the correct answer, the next step would be an MRI early December. Steroids and Avastin are the best course of action. The hypobaric oxygen chamber is also an option, and we will work out the legistics of that happening while we are here.

Leah is receiving intense rehab during the day, and she is exhausted. She misses home and our family being under one roof. Please continue to pray for her strength, peace, and complete healing. 

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