1 Year + 227
1 year +227
Tate is back in her corner this evening and we’ll both be back in our own beds sans monitor glow, alarms and beeps. The first few days of an admission are the most exhausting as you adapt once again to all the hospital routines and sounds. I’m grateful to say this was THE shortest admission ever and we never even had to work through the adjustment phase.
The positives: The trial is considered a success and a referral is in to meet with the neurosurgeon. Tate ate more today than I’ve seen in quite some time . Tate crafted for much longer than she typically lasts and I saw a bubbly and positive Tate that I haven’t seen during a hospital admission in over two years. All due to a reduction in pain. We are giving thanks!
The challenges: The emotional high of the pain reduction came to reality last night with a whopper of a migraine , a spinal headache and big tears with Tate’s realization that you remove some of the pain (always the central focus) and Tate then can feel just how sick she feels in every other way. We wanted to celebrate like she was on her way to a cure. And we did….for a moment. But this isn’t a cure. It’s a giant Bandaid. The reality is pain management has zero to do with stopping the disease process causing the pain. We’re still waiting on out of state teams for direction and hoping for more steps with her care team here in Colorado too.
Tonight, Tatum’s pain is back to her baseline. Medication is out of her system and she’ll be back to fighting against it for sleep (she slept ALL night last night!) This next phase will require lots more patience…as we wait for surgery, for the NiH and potentially Mayo to have options, for insurance to approve further genetic studies and all the other areas that need regular attention.
And while we wait, we will give thanks that there is better pain relief to work towards and just as this door was opened , trust that others will be opened too. Thanks for waiting with us!