Day +45
WBC 4.7
1:34am - Respiratory Therapy just left and it was someone who we've had a number of times in the past but hasn't had Max in about a month. He was so nice and he really gave Max the full service treatment. There's something to be said for nice people - they make all the difference. "RT" has been a huge part of Max's transplant because he has so many lung issues, and they are probably the most overworked department in the hospital. So when one of them really takes the time to take care of Max - extra care even - it means a lot. His breathing has been pretty stable again today. He still needs oxygen through the cannula but it's been turned down slightly. He's on a little less sedation now too, so when he's feisty he reaches up and pulls it out of his nose. It's kind of nice to see that feistiness, it qualifies in my book as an emotion, and it's nice to see some emotion.
Today the doctors told us what separates the levels of severity of gut GVHD and it's all in the amount of stool. Max's total amount is still nearly as high as it was before they started this round of steroids. It is looking a little bit better (less straight blood), so they are still not sure if it is working or not. They told us that if there isn't more improvement in the next couple of days, they will need to take another look inside (bottoms up!) and if so they will need to intubate again. We can't imagine Max going back on a vent, even if just for a procedure, because he's had so much trouble coming off the vent. But they have to do what they have to do and today I even joked that I want a rubber stamp made with my signature so anyone could just sign the release forms for these procedures. If they go in from the bottom while he is on the vent, they are also going to go in and do a bronchoscopy to clear out the upper lobe of his right lung which has remained collapsed for the last couple of days.
This is the fourth day in a row with a WBC drop but the doctors told us his number is still good, and there are going to be "lulls" in the counts.
We also want to alert everyone to a new website for another supergreat Hurler kid. His name is Anthony and he and his family are from Illinois, from the Quad Cities area. He's a twin, but his sister does not have Hurler. Here's the site: http://www.caringbridge.org/il/tonythetigre/index.htm
Please take the time to visit his site and wish him well, it's nice to get some support at any time, but especially heading into transplant. We met his family when they were still researching hospitals, and now that they are here they are going through all of the fears and emotions we went through in the beginning as well.
Finally, Margaret and I both visited the site of a family who lost their son very recently (to hepatoblastoma). They had been living at the Ronald McDonald House for a year and a half and while we didn't know them, Grace played with the boy's siblings a few times. We were reminded that "tomorrow" is not a promise. It is a gift. Somehow, with the pain of their loss so sharp they still have this wonderful advice: "Take a day off of work to be with your children. Even if it is to have fun. Do it. Don't wait. Don't put it off. If you have worked and earned a personal day, do it. Take them in your arms hug and love them. Just think of the great memory: "I took the day off of work and hugged and loved my kids all day. That's all we did."
Please take this advice,
--mike
1:34am - Respiratory Therapy just left and it was someone who we've had a number of times in the past but hasn't had Max in about a month. He was so nice and he really gave Max the full service treatment. There's something to be said for nice people - they make all the difference. "RT" has been a huge part of Max's transplant because he has so many lung issues, and they are probably the most overworked department in the hospital. So when one of them really takes the time to take care of Max - extra care even - it means a lot. His breathing has been pretty stable again today. He still needs oxygen through the cannula but it's been turned down slightly. He's on a little less sedation now too, so when he's feisty he reaches up and pulls it out of his nose. It's kind of nice to see that feistiness, it qualifies in my book as an emotion, and it's nice to see some emotion.
Today the doctors told us what separates the levels of severity of gut GVHD and it's all in the amount of stool. Max's total amount is still nearly as high as it was before they started this round of steroids. It is looking a little bit better (less straight blood), so they are still not sure if it is working or not. They told us that if there isn't more improvement in the next couple of days, they will need to take another look inside (bottoms up!) and if so they will need to intubate again. We can't imagine Max going back on a vent, even if just for a procedure, because he's had so much trouble coming off the vent. But they have to do what they have to do and today I even joked that I want a rubber stamp made with my signature so anyone could just sign the release forms for these procedures. If they go in from the bottom while he is on the vent, they are also going to go in and do a bronchoscopy to clear out the upper lobe of his right lung which has remained collapsed for the last couple of days.
This is the fourth day in a row with a WBC drop but the doctors told us his number is still good, and there are going to be "lulls" in the counts.
We also want to alert everyone to a new website for another supergreat Hurler kid. His name is Anthony and he and his family are from Illinois, from the Quad Cities area. He's a twin, but his sister does not have Hurler. Here's the site: http://www.caringbridge.org/il/tonythetigre/index.htm
Please take the time to visit his site and wish him well, it's nice to get some support at any time, but especially heading into transplant. We met his family when they were still researching hospitals, and now that they are here they are going through all of the fears and emotions we went through in the beginning as well.
Finally, Margaret and I both visited the site of a family who lost their son very recently (to hepatoblastoma). They had been living at the Ronald McDonald House for a year and a half and while we didn't know them, Grace played with the boy's siblings a few times. We were reminded that "tomorrow" is not a promise. It is a gift. Somehow, with the pain of their loss so sharp they still have this wonderful advice: "Take a day off of work to be with your children. Even if it is to have fun. Do it. Don't wait. Don't put it off. If you have worked and earned a personal day, do it. Take them in your arms hug and love them. Just think of the great memory: "I took the day off of work and hugged and loved my kids all day. That's all we did."
Please take this advice,
--mike
posted by Mike Ciacciarelli
0 Comments:
Post a Comment
<< Home