1 Year + 193
1 Year +193
With our eyes on him, we can also walk on water.
This was my photo in my 2 year old memory. That was a tough time in day 47 of that hospital stay. Pain was uncontrollable and we were in process with meeting with all people involved with the bone marrow transplant team. Tates future was entirely uncertain. The similarities after surviving the harrowing journey of transplant are devastatingly similar.
Last night was tough. So much pain, so many tears, I wasn’t sure we’d make it without taking Tate into the ER which would land in an admission. There’s pretty much an open invitation when we can no longer handle things at home. Tate fights hard to stay out of the hospital. We let her lead our decisions.
I lay with Tate until 4 this morning when her breathing and body twitches finally seemed to settle down. But sleep even after that was restless. Hips and feet have been added to the list of pain sources this week and all is rapidly worsening. After exhausting all med options, ice packs, heat, fans, music and all forms of distraction, we’re left feeling helpless with nothing more to offer her than physical touch. Tate rarely asks for “help” during the night. Not because she couldn’t use it, but because she is Tate. Selfless, compassionate and tough as nails. She doesn’t want to place her struggles on the people she loves. When she does, it’s heartbreaking as I know things are bad. Things were bad last night.
Day brings some relief. Too many narcotics unmonitored at night are dangerous at the levels Tate needs. Day brings a few more options and in general, pain is a bit better. We’re desperate for movement this week. IVIG infusions Monday and Tuesday mean more eyes, conversations and needed labs. They likely won’t show much change, but we’re always aware of what could be brewing, so at the very least, there’s s small measure of comfort in minimal or expected changes.