Today might have been the longest IVIG hospital treatment day for my girls and I. The day on its own is tiresome, I mean who wants to sit around a hospital on a day off for 8 plus hours. Throw in an hour meeting with head docs about the possible bone marrow transplants and then a screaming two year old one cubicle over and you have a day point five on your hands.
I’ve been against this bone marrow business since first hearing about it. The way they originally presented it to me was a last resort option and as a road we do not want to go down. Even the Naturopath is baffled why such a thing is even being discussed. And especially now when both girls have been on a serious healthy kick since August.
The end result does sound charming, for sure. New immune systems meaning unassisted health. No more IVIG hospital days. Possible liver improvement for Lexis and larger lung capacity for Lindsey. But hospitalizations for at least three months? Extreme nausea during that time due to the chemo and other drugs and treatments? I’ll stop there. To me it’s not worth it.
Back to the day that has almost passed. I fully realize that we are there for my daughters and they get to lie or sit in beds and nap half the time if they want to. But I’d like to nap too! And all I have is a chair to doze off in. Once in a blue moon one of the nurses will offer me an open bed, bless her little heart but this has happened maybe twice in four years.
Anywho, the process is typically laid out like this: right after lunch we’re all sleepy so we nap. However, this simple fundamental practice isn’t possible when there is a two year old screamimg out in the cubicle right next to you. Sure, it wasn’t non-stop for hours but it was loud, and off and on for a couple hours, disturbing us all.
The father was obviously clueless as was the silent parent a few more cubicles over the other direction while their kid berated them for waking him up. “I can’t believe you woke me up! Why would you do that?! I was sleeping!” I almost laid that kid across my knees then and there.
Five o’clock rolled around and we were ten minutes away from being able to leave. Then things got dicey with Lexis’s O2 levels. She was fine but their machines seemed to think there was an issue, can you imagine? So tack on another hour including another doctor visit and bada bing, we’re all clear to leave.
With Lion King stuffies, water bottles and future blood requisitions in hand, we waltz on out of the unit and out into the hall. That adrenaline rush of freedom mixed with an intense headache is icing on the days cake. I shouldn’t complain. There is an amazing team of docs looking after my girls and these infusions top them up for another month of health for days.
Nonetheless the struggle is real. After this I feel almost entitled to a day off, to sleep half the day and use the other half to refocus and who knows, I just might.