Friday, August 17, 2012

Eli walking the halls with a "warm" blanket
I was looking forward to writing my post tonight. Not because I had a great lead-in idea, obviously I do not, but because Eli had such a good day – considering. It would be nice to write something positive I thought, though I do try to stay positive although I know it is hard to tell sometimes. His temp skirted the edge last night without being medicated, but it went on down as the morning came and he had no fever today. He didn’t throw up with any of his meds, and we have been on three different walks around the floor today. He participated in speech therapy and occupational therapy, and he has played a lot of video games instead of just watching TV. He even took one small bite of applesauce. Just living in the moment of what was happening in this room and no other rooms anywhere else in the world today, I was feeling pretty good. Then about 1800 hours, I was reminded that the night was coming, and that this is the night of Day Minus Three. Eli’s temp made a steady climb to 103 tonight, he has thrown up, and his diarrhea has gotten a little worse and his electrolytes are beginning to make bigger dips and he is popping a rash. I stayed up until about 300 hours or so last night watching to see what the antibiotics were going to do to him, then got to sleep until about 730 hours. He was plenty awake today, and I knew that if I dozed off he would wake me for something 20 minutes into the nap. So, I didn’t dare take a nap unless he did, and we could only take a nap beginning right after he peed in order to get the maximum amount of time because we are in the two-hour urination phase. Finally, when his temp got to 100.3 about 7 p.m., he peed and he was so pitifully sad I talked him into going to bed with the intentions of myself lying down. We did and he immediately drifted off. I, however, didn’t drift off until the nurse shift change, like within five minutes of the shift change checks. So, with my two-hour potential down to about an hour if I fell asleep quick, I got up and ate supper and waited for the night nurse to come back for her chores. I’m hoping to have another window for sleep about 2400 hours which will be when he needs to pee again and because it is taking me so long to get this post up. I would let the nurse do it, but he will wake up less and go back to sleep more easily if I do it and I want to see if this Tylenol brings his temp down before I get any sleep. He’s only under a sheet, no blanket, and we’ve cranked the air down trying to keep him cool on the plastic mattress. We’ve had to pack him in ice packs while on Tylenol on this night before and it only brought it down to about 101 something.
Playing Speech Go Fish in speech therapy
Anyway, I’m disappointed that I’m not writing about sunshine and puppies tonight as I had figuratively planned. But, I will save you another dreary read of my rant about the night, and not go there. Please, remember Hunter Alexander in your prayers. I think he is very sick fighting a resistant infection, if cancer weren’t enough. Thank you for your continued prayers for all of these children. I wish I had no names to list for prayers, and it is so overwhelming realizing that the list is endless. Our doctor said 500 children are diagnosed with medulloblastoma a year just in the United States. That’s only one kind of cancer, and it’s really just a subset even then. It’s hard to fathom a child being inflicted with something so evil and crushing from no action of their own, unlike an adult who smokes, drinks, sunburns, and eats unhealthy for decades knowing better all the while, aware of the risks of his or her choice (a couple of which I am also guilty, so no nasty notes please) As one with the mindset of a defender and protector, it so weighs on me to stand helpless at the side of innocence.
Eli walking the halls with his warm blanket. I
like this picture for some reason that is in
the hall, so I snapped a picture as he passed.

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