It's super fun. In all reality I've learned to just live we it.
This morning she was up a little earlier than the past couple of days. It wasn't long before she was pointing at the menu. Every time I order her food I'll get the menu out and ask her opinion. The sad thing was that because she was about to be sedated she couldn't eat. We didn't have to wait too long before I took her down the hall to where the procedure would take place. There was a TV in the room so thankfully she had distraction while we waited.
I had gone back and forth but finally made up my mind that I would stay in the room this time. To which I'm still giving myself fist bumps about.
Once everyone was there that was supposed to be there they gave her medicine to fade her out. This wasn't as powerful as what she was given in the past. She was properly zonked out, though, even though her eyelids were fluttering here and there.
As they were getting her in the right position (fetal-like position) they realized her diaper was really full. There were no diapers in the room so I ran back to get one. The pediatric hospitalist (the hospital pediatrician) saw me running and immediately asked what was wrong, when I told him he laughed and said, "oh that's not an emergency, well maybe it is." Once I got back, with diaper in hand, the doctor took over trying to change her. Then she immediately started asking which way it went. I seriously love our doctor. Just watching her perform this procedure, and how she directed people, and how she insisted that everything was perfect for her patient, reaffirmed my faith that we are right where we should be.
Just to run you quickly through the procedure, she sticks a tiny needle in her back and removes a small portion of her spinal fluid (I believe it's twice as much as she injected) then she takes the syringe full of yellow cancer fighting chemo and injects it into he same spot. The procedure was quick and about five minutes after the injection she was already waking up. She had to stay on her back for 30 minutes to allow the chemo to distribute throughout her body. That was one of the trickiest parts. We were able to move the bed so she had a clear view of the TV. Sadly about 15 minutes in a different show came on, one she did not want to see, so that caused some issues. I think it's important to note that the very show she was mad about was the one she had been asking for all week but never seemed to be on when we turned the TV on.
During the laying flat for 30 minutes they ran another chemo med through her port. It only took about ten minutes. Someday I'll write some posts all about what this leukemia is doing to her and all the medicines that she's being given to attack it.
Dr. T. Told us after it was over that the rest of the day would be a "boring day." I kind of love that I have a doctors prescription for boredom. We spent it on iPads, taking naps and watching a little Duck Dynasty in the evening. I was supposed to get her up and walking but could never convince her to. However she did ask to use the bathroom a few times so she had to get up and walk there and back for that. I'm calling that good enough.
By this evening she was once again so tired and ready for bed. I'm not sure if it's the meds or the weeklong stay in the hospital that is wiping her out. Most likely both.
The hope is that we go home soon. It all depends on what her labs look like in the morning.
And now a word. Mostly because I feel impressed to share this. There are so many opinions on this and I want mine to be clear. I have faith in medicine. I have faith in modern technologies and what advances they have allowed to take place. Without it I would, very literally, not be here. I have faith in the people who have studied and researched medicines, and therapies and ways to put it all together to save lives. I believe that those people were given gifts from Heavenly Father that allowed them to make those advances and discoveries. I have faith in the medicine that they are giving my sweet daughter.
And with that I'll step off my soapbox. For now.
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