Wednesday, March 4, 2009


Spoke with Haven's Oncologist this morning - Cardiology report came back great. Miss Haven has a good heart and the chest looks perfect!

We're very happy for this news.

Haven will be in MRI tomorrow for the Ganglioneuroblastoma Tumor in her abdomen. This is our followup. Her last MRI was in November 2008.

The hospital called yesterday wanting to reserve a room for her for overnight recovery and to be monitored. I was able to convince them not to make her stay overnight even though they were really urging me to have her monitored. The more her file grows with ROHHAD and the breathing issues involved with ROHHAD the harder it will be to fight this request. I'm sure by our next MRI they will keep her.

Haven has had issues with 3 other MRIs and had to be intubated during and after the test - but it was not due to her ROHHAD syndrome.

Mostly likely Haven will be in recovery for about 1 1/2 hours on oxygen. Her oxygen is usually very low after an MRI so once it is up to at least 97% they will send her home. I'm guessing, from past MRIs, she will be at the hospital for about 5 to 6 hours.

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