Saturday, November 14, 2009

Such a little trooper

9 month after our geneticist ordered a repeat MRI of Marley's brain, and after 4 cancellations- I can now say the test has finally been completed!

We took Marley to Seattle Children's yesterday morning for a sedated BAER (hearng test, MRI of her brain and spine, and CT scan). Jason and I were with her as she got the gas to fall asleep and then we waited almost 6 hours before we could see her again. The good news is that her hearing test showed a slight improvement in her hearing which means she probably doesn't have DOOR syndrome- which is progressive by nature. So while she probably doesn't have DOOR we aren't any closer to knowing what she does have.

The bad news is that she had a minor complication in surgery. She was intubated for the procedures and when it was removed it caused swelling of her throat. After some epinephrine, suction and a nebulizer treatment she was doing much better. But she had enough stridor that the doctors recommended she be admitted and spend the night. Ugh!

At first we were put in a shared room and when Marley starting her sniffling and snorting (signs of her nonstop nasal congestion) we were promptly transferred to a private room and put in isolation. Sweet! A dose of dexamethasone later she was faring quite well so the hospitalist agreed to discharge Marley home at 11pm.

Oh it was so great to go home! She slept great, we slept ok. I think I was up every hour just to check on her. Her throat is sore today and she is a little wheezy on inspiration but definitely improving.

I'll be calling the ENT and geneticist this week for the results of her other tests. I don't expect anything surprising with the results. I'm just so glad that we don't need to repeat them for at least another year!