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Mommy's turn at the hospital

posted Apr 4, 2013, 5:00 PM by FightingFor Mya

So, I came down to Boston to relieve Ray yesterday so he could go home and get some much needed rest. He said that he worked with a GI nurse to clean Mya's stomach tube and get it turned. It was extremely tramatic for Mya. Last night, she woke up at 2am crying and screaming that her stomach hurt. After about 15-20 mins, we were able to get her to quiet down (with some medicine assistance) and were able to sleep until 7am. Our roommate then decided it was a good time to start yelling and carrying on himself (he is just over 1years old.

Today, I've been working with the GI team to see why Mya is having such pain at her G-tube site. We went and got an x-ray to see if anything would show and it didn't. The next step is to do a simple dye test, to see if we can see anything wrong on the inside. The test itself is quick. The other option after the dye test is to get an ultrasound. What makes this difficult is that if this is an infection, it will be hard to tell because Mya doesn't have any immune system, which would normally turn the G-tube site red. We won't see any redness until her levels come back up.

The drawback to all of this is that Mya has become overly sensitive to ANYONE touching her stomach. Well, this makes it difficult because that is how all her medications are being administered, through her G-tube. So, a new little wrinkle to all the treatments.

On a bright note, Mya also did her hearing test today, which happens in between each chemo session. She did extremely well and the audiologist said that as far as she can see, Mya hasn't suffered any hearing lost due to the chemo treatments. (Win for us, I'll take it!)

Here's to hoping that tonight will be a much quieter night than last night and that the test tomorrow will go smoothly.

We will be in the hospital until Mya's ANC count is above 500. Right now, its like at zero. Although her platelets are at 89k, and her hemoglobin is around 9.6. All thanks to her transfusions that she has gotten over the last few days.

Will post again tomorrow after the dye test results.