I had tried to prepare TJ for what trips like this do to you. How you think you know what "tired" is. How you think you know what a bad day is or even a bad week. 13 hours a day at a hospital will make sure you do.
When you have a loved one, spouse or child in particular, that's going through an extended illness it changes you. It both weakens and strengthens you all at he same time. Your body goes through the phases of pure unadulterated exhaustion and restlessness. After that your already stretched mind starts to become even more fragile, more frail. A lot is expected of you to continue to "keep your head up" and keep moving forward. Of course being a good caregiver you do, you hide from everyone the inner demons your struggling to cope with and face because it means your complaining or worse, weak. Are you? No of course not and it is okay to vent, cry, rage, flat out be a bitch. Just don't do it more than once. And just don't do it often. Fatigue does funny things to people. Years and years of medically induced fatigue changes you in ways that unless you've spent nights listening to machines, waiting for them to lull you to sleep but scared to fall asleep because you might miss an alarm, a break in a line, a low oxygen warning it's not something I can begin to eloquently describe that would make sense.
TJ has been amazing. He's been patient and kind and gentle with not only Alana, but me.
Alana is resting finally. It was a very long day and she was even more upset and clingy than usual which prevented me from doing many (any) updates. We opted to leave the hospital tonight and arrived at the hotel shortly after 8pm (4 hour time difference from home). She's upset, in quiet a bit of pain, clingy, ad overall uncomfortable. Her breathing stabilized and her resting heart rate finally dropped closer to the high 120s. Once that happened she wanted to eat so she had cream of wheat and hot tea which helped her disposition. Right now she is resting via some medication and I'll be getting up every 3 hours to check vitals unless I need to sooner.
She's done so well. So incredibly well with all of this. Not even I can fathom amount of pain, frustration, confusion, and worry she must have bouncing aroun in that beautiful little head of here.
Tonight's post is a jumbled mess but I am okay with that. I'm tired. No new results or anything today aside from what I mentioned earlier. Tomorrow is rheumatology and possibly more labs.
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