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New issue

posted Aug 18, 2014, 7:04 AM by FightingFor Mya

Last Wednesday after Mya's bath, she experienced problems breathing. Ray said she stopped completely, I was in the bathroom with Gia and didn't witness what he did. By the time I got to the room, Mya was breathing, but with difficulty. After a few minutes, we got her to the couch and she seemed fine. We called Dana Farber and they wanted us to come in. So, Ray and Mya went to the ER at Boston Children's.

Once there, the doctors did every conceivable blood test to see what might have caused her breathing problems. They took x-Ray's as well. While there, Mya had another episode. The doctors said it was a seizure. Mya felt it coming on, said she didn't feel well, then she kind of froze for about 1 minute. After that, she slowly "came back", answering questions that were asked of her. The doctors said that they were very small seizures, but wanted her to be admitted for observation. So, Mya stayed the night. They started her on Kepra, an anti-seizure medication. She was on this after her brain surgery, so not a brand new drug for her, but one she hasn't been on in awhile.

On Thursday, Mya was connected to a machine to monitor her for possible seizures. She had one Thursday morning, same experience as before. They kept her all day Thursday and was going to release her, but she had another seizure just before they were going to disconnect her!!! So, she had to spend another night in the hospital connected to the monitors. They continued with the Kepra, increasing the dosage a bit.

On Friday morning, she was evaluated. They said if she could make it past 1pm without a seizure, she could go home that day. She did it!! Mya was released Friday afternoon and everyone was able to sleep in their own beds on Friday night.

The Oncology team says that the seizures could be related to the radiation sessions she just finished. The sessions have made Mya lose her voice and she has a 2 1/2 in wide band of a rash from the base of her skull all the way down her back. That's where the beams were concentrated on her spine. Almost like a burn mark on her skin. The seizures could also be an indication that the tumors are getting worse in her brain and are effecting more/different areas.

We wanted Mya's MRI moved up from Oct. 1st. Her Oncology team is on board with us to do it by mid-September. Good for us, bad because of the reason why.

So, we are home right now. Tomorrow, the visiting nurse will come and take blood for testing her levels. If Mya doesn't need platelets, we will go on Tuesday to the elementary school to meet her teacher and see her school. If she does need platelets, we will get in the car and go to Dana Farber for the day. Really hope we can go to school to meet Mrs. Gross!

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