Last week when Madeleine finished treatment I mentioned to her doc that she had just started to get really crabby- something we expected. What we didn't anticipate was a chain reaction of all side effects in just a few days making for a very unhappy baby and a serious test of patience.
The biggest of these has been Madeleine's inability to rest at night. It started just waking maybe twice through the night and has progressively gotten worse every sequential night to now waking every 30-60 minutes over an 8-10 hour period. This has been happening for the last 7 nights in a row, which are typically manageable for babies. However, Madeleine awakes in a fit, whimpering a little, then crying and kicking or rolling, and ear piercing screaming. It's gut wrenching.
We took her to the ER Tuesday afternoon; after 7+ hours they ruled out hydrocephalus complications but still offered no solutions to the crying baby we felt was clearly in pain. Two more nights and in clinic today they moved us straight over into the hospital for tests ASAP.
I'm beyond exhausted at this point:
Worst case scenario- the AT/RT disease spread or a new tumor in a new place causing these neurological symptoms.
Slightly worse scenario: a rhabdoid tumor found in her kidney causing the pain & elevated blood pressure.
Best case scenario: residual pain and discomfort, possible swelling in the brain from the radiation. This can be treated at home with medication.
The Thursday before Christmas 2011-December 22- is when this nightmare began. Oh, the irony... In some ways Jeff & I both had an intuition about this. But we're also extremely hopeful that this too shall pass and our little girls get to have Christmas together in our home in our pj's. Praying the docs figure it out quickly and give baby girl the pain relief she needs so we can all sleep at home. She's hooked up to an EEG tonight to rule out seizures. Praying for the best for Madeleine. Xoxo
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