Day 0 - Transplant Day!
What an overwhelming experience to say the least. The staff kept telling us it would be anti-climactic, but how can the chance for your child to live be anything short of a miracle? How can you ever thank the family who donated the cord blood? Max's life has been full of miracles and moments of triumph, today was the greatest of them all.
The day started with lots of coughing for Max. He has begun wheezing again. It could be a residual effect of the ATG, or he may have caught a bug. His nose has been stuffy and runny too. A "sample" has been sent down to the lab for testing to make sure he doesn't have viral pneumonia, but Dr. Grewal is not "too worried" about it. They put him back on oral steroids and he is now getting breathing treatments every 4 hours. He sounds better tonight than he did this morning. Max had no idea what a big day today was going to be.
The transplant was scheduled for 4 PM today, but the cord blood arrived at 2 PM instead. Everything stopped when the blood arrived, Max got a number of pre medications (to prevent reactions) , and then the transfusion began. Thank goodness Mike was at the RMH and got here in time! The entire thing took all of 15 minutes, and then the new cells were in Max's little body.
The charge nurse came in and took some Polaroid pictures of Max, Mike and I, and Max was given a balloon and transplant present from the hospital. He was appropriately dressed in his SuperBoy outfit for the occasion. Grannie, Katie and Grace came to the room briefly. Toward the end of the transfusion Max fell asleep. Some kids cough and vomit from it but Max handled it beautifully. Because of the preservative in the blood, there is an odor during and some time after transplant. Max now smells like creamed corn!
We are so incredibly proud of our son today. The road he has traveled has been very rough. He has been fighting for his life from the moment his life began. He has worked incredibly hard to do what he can do. Just think - one year ago Max was spending his 2nd night at home after living in the NICU for almost 6 weeks. Feeding tube in his nose, heart and breathing monitor attached, we marveled at his strength and determination. Tonight we do the same.
Thank you for all of your prayers and support. Please keep pulling for Max and the other children here. Some of the roughest days lie ahead as the effects of the chemo take their toll. Please say special prayers for Grace's friend Kendall who is having a rough day.
It's now time for bed, and unlike the east coast, there's no lack of power here. Max is wide awake and in the best mood he's been in all day.
Thanks for all your support,
--Margaret
The day started with lots of coughing for Max. He has begun wheezing again. It could be a residual effect of the ATG, or he may have caught a bug. His nose has been stuffy and runny too. A "sample" has been sent down to the lab for testing to make sure he doesn't have viral pneumonia, but Dr. Grewal is not "too worried" about it. They put him back on oral steroids and he is now getting breathing treatments every 4 hours. He sounds better tonight than he did this morning. Max had no idea what a big day today was going to be.
The transplant was scheduled for 4 PM today, but the cord blood arrived at 2 PM instead. Everything stopped when the blood arrived, Max got a number of pre medications (to prevent reactions) , and then the transfusion began. Thank goodness Mike was at the RMH and got here in time! The entire thing took all of 15 minutes, and then the new cells were in Max's little body.
The charge nurse came in and took some Polaroid pictures of Max, Mike and I, and Max was given a balloon and transplant present from the hospital. He was appropriately dressed in his SuperBoy outfit for the occasion. Grannie, Katie and Grace came to the room briefly. Toward the end of the transfusion Max fell asleep. Some kids cough and vomit from it but Max handled it beautifully. Because of the preservative in the blood, there is an odor during and some time after transplant. Max now smells like creamed corn!
We are so incredibly proud of our son today. The road he has traveled has been very rough. He has been fighting for his life from the moment his life began. He has worked incredibly hard to do what he can do. Just think - one year ago Max was spending his 2nd night at home after living in the NICU for almost 6 weeks. Feeding tube in his nose, heart and breathing monitor attached, we marveled at his strength and determination. Tonight we do the same.
Thank you for all of your prayers and support. Please keep pulling for Max and the other children here. Some of the roughest days lie ahead as the effects of the chemo take their toll. Please say special prayers for Grace's friend Kendall who is having a rough day.
It's now time for bed, and unlike the east coast, there's no lack of power here. Max is wide awake and in the best mood he's been in all day.
Thanks for all your support,
--Margaret
posted by Mike Ciacciarelli
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