Day -10
Check it out! We've got a countdown. From now until day ZERO (transplant day) we're counting backwards. Then the numbers go up, all the way up hopefully to day 100 which would be the first chance to actually come home to Chicago. But that's a long way away.
Today Max was admitted for the long term. He has his own room which over looks River Road, a nifty little thoroughfare that borders the Mississippi River which divides the campus of the University of Minnesota. We'll have a birds-eye view from the fourth floor looking down on many bleary-eyed freshmen heading out for early classes.
The room has two parts, an ante room (we're calling it Auntie's Room) and a main room. Auntie's Room has a sink for washing hands and some basic storage. It's one more step to removing and sealing off germs before coming into Max's room. The main room has a big, loud, heavy, metal crib with four adjustable sides. This is Max's main home. Elsewhere, there's a bench to sit on (and look out the window), a TV, a phone, another sink, and lots of medical stuff. There's a bathroom, but we can't use it. Only patients are allowed to use the facilities. So we gotta go down the hall. Did you know that while Max doesn¹t use the bathroom, it is where all of his diapers go? That's 'cause they collect them and weigh them. Look for the entire collection to be on EBAY soon!
Grace's friend Kendall is down the hall, but inter-room mingling is strongly discouraged. So we're pretty confined and really the worst is for our little Bubba. Max has been on the move all over the Ronald McDonald House and now he's mostly stuck in his crib. They have people called "Unit Volunteers" who come in and play with the kids to give you a break. One of them brought in a large red mat and Max was able to stretch out a little bit.
Today he just got one anti-siezure med (tomorrow's chemo can cause seizures). So in terms of the actual transplant, it was kind of uneventful. But it didn't feel that way for us or Max. He gets his vitals checked every four hours (round the clock) and respiratory therapists now come in three times a day to give him his breathing treatments. The transplant Doctors stop by in the morning and before they leave, and the regular blood draws begin tonight, and will continue every night at 4am. Once occupational, physical, and speech therapy starts, I don't know when Max will have a moment of peace.
I gotta get Grace to bed, we left Mom and Max alone in the room and now it's late. Grace was pretty psyched to see her bro in the room and then was so sad as we left the hospital. Overall, our little drama queen is handling things pretty well. Things are going to get really hard, really fast. We are so thankful that we've had Grandma Chick out here to help watch Grace through so many appointments. To be able to be with Max together is so very important. On Friday, my sisters come out and we'll have more help. This will be nice, because by the end of the week, most of the chemo stuff you've all heard of--hair loss, appetite loss, energy loss, etc. will be happening. So stay tuned!
--Mike
Today Max was admitted for the long term. He has his own room which over looks River Road, a nifty little thoroughfare that borders the Mississippi River which divides the campus of the University of Minnesota. We'll have a birds-eye view from the fourth floor looking down on many bleary-eyed freshmen heading out for early classes.
The room has two parts, an ante room (we're calling it Auntie's Room) and a main room. Auntie's Room has a sink for washing hands and some basic storage. It's one more step to removing and sealing off germs before coming into Max's room. The main room has a big, loud, heavy, metal crib with four adjustable sides. This is Max's main home. Elsewhere, there's a bench to sit on (and look out the window), a TV, a phone, another sink, and lots of medical stuff. There's a bathroom, but we can't use it. Only patients are allowed to use the facilities. So we gotta go down the hall. Did you know that while Max doesn¹t use the bathroom, it is where all of his diapers go? That's 'cause they collect them and weigh them. Look for the entire collection to be on EBAY soon!
Grace's friend Kendall is down the hall, but inter-room mingling is strongly discouraged. So we're pretty confined and really the worst is for our little Bubba. Max has been on the move all over the Ronald McDonald House and now he's mostly stuck in his crib. They have people called "Unit Volunteers" who come in and play with the kids to give you a break. One of them brought in a large red mat and Max was able to stretch out a little bit.
Today he just got one anti-siezure med (tomorrow's chemo can cause seizures). So in terms of the actual transplant, it was kind of uneventful. But it didn't feel that way for us or Max. He gets his vitals checked every four hours (round the clock) and respiratory therapists now come in three times a day to give him his breathing treatments. The transplant Doctors stop by in the morning and before they leave, and the regular blood draws begin tonight, and will continue every night at 4am. Once occupational, physical, and speech therapy starts, I don't know when Max will have a moment of peace.
I gotta get Grace to bed, we left Mom and Max alone in the room and now it's late. Grace was pretty psyched to see her bro in the room and then was so sad as we left the hospital. Overall, our little drama queen is handling things pretty well. Things are going to get really hard, really fast. We are so thankful that we've had Grandma Chick out here to help watch Grace through so many appointments. To be able to be with Max together is so very important. On Friday, my sisters come out and we'll have more help. This will be nice, because by the end of the week, most of the chemo stuff you've all heard of--hair loss, appetite loss, energy loss, etc. will be happening. So stay tuned!
--Mike
posted by Mike Ciacciarelli
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