Day -8
Today was another good day for Max and another day for us to get more comfortable with our situation. He spent Tuesday night peacefully asleep through most of his vitals and IV changes. Most of the night was spent with Dad rolling off the bed trying to gather quickly what was going on in the dark with no glasses. I've gotta hand it to the nurse, her silence and her ability to move around only illuminated by a small flashlight were admirable.
Margaret then took over for the day (and night) and the biggest event came when she emptied out his bath and accidentally hit the call light. This button in the bathroom has some sort of high-priority associated with it and the nurse and aide came running in only to find Max asleep. Max's appetite remained good today but the first sign of the effects of chemo came and it was in his diaper so I'll leave it up to the imagination. Let's just say that the nurses are making up a concoction called "Butt Paste" to help take care of the situation.
His attitude has remained positive overall, and we've become more comfortable taking part in most of his treatments. We are allowed to administer most of his oral meds, his ear drops, help with the vitals and breathing treatments, and most importantly administer "mouth care" This is when we use 3 swabs to go all around Max's mouth with salt and soda water. One of the first things that can happen as the immune system is eroded is yeast and mouth sores are the first sign.
We were visited again by some of Max's therapists and he spent some time today working with a physical therapist out of his crib. We have a red mat in the room and Max was able to work and play there. Max has a good time out of his cage, and he just wants to keep going off the mat, but that's a no-no germ- wise.
As for Grace, she was able to visit her brother briefly today and when we returned she was able to work on a craft with some "Viking Wives". Once a month some wives of the Minnesota Vikings come to the Ronald McDonald House and work with the kids. I wasn't able to tell who the lucky players were, but this was a very nice gesture. Grace seemed most interested when she found out the Vikings had purple uniforms. Then at night, a local art teacher came by and the project was called "Van Gogh's Flowers" and Grace and Gram Chick worked on chalk drawing.
So we're still on track for new cells, and we've got a couple more days on this chemo (Busulfan) and then we change to a different one. Keep rooting for Max to stay strong and thanks again for all the support. It means so much to come home from the hospital and be met with so many wonderful bits of encouragement.
All the best, and Go Vikings! (or the wives anyway)
mike
Margaret then took over for the day (and night) and the biggest event came when she emptied out his bath and accidentally hit the call light. This button in the bathroom has some sort of high-priority associated with it and the nurse and aide came running in only to find Max asleep. Max's appetite remained good today but the first sign of the effects of chemo came and it was in his diaper so I'll leave it up to the imagination. Let's just say that the nurses are making up a concoction called "Butt Paste" to help take care of the situation.
His attitude has remained positive overall, and we've become more comfortable taking part in most of his treatments. We are allowed to administer most of his oral meds, his ear drops, help with the vitals and breathing treatments, and most importantly administer "mouth care" This is when we use 3 swabs to go all around Max's mouth with salt and soda water. One of the first things that can happen as the immune system is eroded is yeast and mouth sores are the first sign.
We were visited again by some of Max's therapists and he spent some time today working with a physical therapist out of his crib. We have a red mat in the room and Max was able to work and play there. Max has a good time out of his cage, and he just wants to keep going off the mat, but that's a no-no germ- wise.
As for Grace, she was able to visit her brother briefly today and when we returned she was able to work on a craft with some "Viking Wives". Once a month some wives of the Minnesota Vikings come to the Ronald McDonald House and work with the kids. I wasn't able to tell who the lucky players were, but this was a very nice gesture. Grace seemed most interested when she found out the Vikings had purple uniforms. Then at night, a local art teacher came by and the project was called "Van Gogh's Flowers" and Grace and Gram Chick worked on chalk drawing.
So we're still on track for new cells, and we've got a couple more days on this chemo (Busulfan) and then we change to a different one. Keep rooting for Max to stay strong and thanks again for all the support. It means so much to come home from the hospital and be met with so many wonderful bits of encouragement.
All the best, and Go Vikings! (or the wives anyway)
mike
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