Day +94
WBC 4.8
Sunday November 16
Day +94
WBC 4.8
This is Mike with a quick update from Sunday morning. The rest of this will be from Margaret from last night. This morning he had his third round of dialysis and again, he did very well. They took off about 1.4 kilos today. One part of the machine broke about 20 minutes before they finished, so they stopped early, but he still got most of it. His legs, face, and arms look very skinny. But his belly is still quite big. We need someone to do a "stool" dance for him and get some things moving. They also were able to turn down the rate a little on the ventilator last night so he's still making progress. Now, on to Margaret, and Saturday's report:
Max lost 1.3 kilos today from dialysis and is looking much better than 2 days ago. They had hoped to get 2 kilos off of him today, but his blood pressure dipped a little during dialysis so they backed off a little. The oscillator is still parked outside his door. His blood gases have been on the fence the past few days, and Dr. Cornfield thought he might benefit from it, but he held off to see if today's dialysis would make a difference. It seems to have done just that, as his vent settings were turned down a bit tonight after having been turned up last night. It is a constant seesaw. He will be dialyzed again early tomorrow morning. Since last night he has been bleeding at the site of the new catheter. He was re-stitched two times today and it finally looks like it is going to hold. His blood pressure has been all over the place today, and at times he has been quite uncomfortable.
Keeping in mind the seriousness of Max's lung and kidney issues, Mike and I are mostly concerned about Max's GVHD. New redness on his legs and arms which appeared a few days ago has everyone concerned. We are praying it is a drug reaction, but with his extensive history GVH is the likely suspect. His immune system is already very suppressed from the GVH and the many treatments he has received for it so far. He is extremely susceptible to infection right now and further treatment would make him even more vulnerable. The doctor told us that it is not the GVH which kills you, it is the infection you get when you are vulnerable. This is all very hard to deal with, and we were desperate for the last round of ATG to stop it once and for good.
It has been an emotional day for us. All of the stress from the events of the past few days caught up a bit. Yesterday's surgery and dialysis went very well but it was scary. All of the emotions experienced while taking care of Max in this setting also took a toll tonight. How do I put this? We have been feeling lonely. You are probably asking yourself, how can this be, with all of the support that so many people have showed this past week? Our loneliness stems from the fact that we have the sickest child on 4A, and one of the sickest children at the RMH. People don't know what to say to us, and at times even have a hard time looking at us. When we walked out of the room with Max yesterday to take him down to surgery everyone at the desk got quiet and some people looked away. When we took him down to CT last week people in the hospital were gaping at us and it was all I could do to shout, "This is my son, he is not a spectacle!" The past few months on 4A have been very difficult for the staff. Many children have died, and Max is now the last one of the "really sick" patients who is here. We have been getting the sense from some that they do not want to be in our room, not because they do not like Max or us, but because it is a hard place to be. But no one knows that better than us, and no one knows it better than Max.
At times we worry that people have given up hope, that they know he is going to die. We struggle with these feelings every day. But Max keeps on trying so we have to too. We feel it is an honor to take care of him, not just because he is our son, but because he is such a strong and courageous person. How could you not want to help him? He has been lying in bed for almost 3 months now just waiting for us to save him. He looks terrible. He is puffy, bloody, rashy and hairy, but he is still MAX. And if he is going to die, then that is even more reason to take better care of him. He has earned it. He deserves only the best.
Please do not misunderstand me. Max has received excellent care here. We are so grateful. It means so much when nurses who are not assigned to Max stop by just to see him. And to the staff who cares for him every day, you have no idea what a gift you give us. You give Max dignity. One respiratory therapist recently went above and beyond and it meant so much to me. She said, "you treat them like they were your own." How true.
Despite how hard this all is, we are still in a better place than some, and we think about this constantly. Yet we are not at all where we thought we would be. This is just not how things were supposed to go. He has had such a hard life, he deserves better.
Now, I know I have rambled, and I have succumbed to writing an emotional update. We try to stay away from doing this for a few reasons. Believe it or not, we have received complaints when we have done this is the past, and at this point we cannot deal with the negative judgments of others. But, here it is. Take it or leave it I guess!
In other news, we had several nice things happen yesterday too. When Grace woke up yesterday she asked if we could have a family day. So, Mike's mom and aunt sat with Max while Mike and I took Grace to dinner at her favorite Minnesota restaurant, Appleby's. She loves it because they give her a balloon, although this time the hostess skipped the balloon but asked Grace if she smoked. Yep, that is right, I guess she was trying to be funny (nice). Inappropriate comments aside, we had a nice time at dinner and we both returned to the RMH with Grace. We all climbed in bed together to watch a movie. This is something we have not done in over 3 months. Grace and Mike both fell asleep, I think I may have too for a few minutes.
We also had 2 special deliveries for Max yesterday. Two different former 4A families returned to the unit and distributed toys for the kids. The one toy did not have a tag on it, but the other was from the Hope for Henry Foundation. If Max was awake he would love playing with the "Little People" toys, and I can see him chewing on one of them right now. Maybe some day ...
Finally (boy this update is long), we must thank Aunt Nancy for staying with us this week. Grace loved her and so did the other kids at RMH. She was such a great help to us, and we were especially grateful for her presence during the events of the past few days. She was more than a little sad to leave Max last night, and we were all sad to see her go. Thanks Nancy!
-Margaret
Sunday November 16
Day +94
WBC 4.8
This is Mike with a quick update from Sunday morning. The rest of this will be from Margaret from last night. This morning he had his third round of dialysis and again, he did very well. They took off about 1.4 kilos today. One part of the machine broke about 20 minutes before they finished, so they stopped early, but he still got most of it. His legs, face, and arms look very skinny. But his belly is still quite big. We need someone to do a "stool" dance for him and get some things moving. They also were able to turn down the rate a little on the ventilator last night so he's still making progress. Now, on to Margaret, and Saturday's report:
Max lost 1.3 kilos today from dialysis and is looking much better than 2 days ago. They had hoped to get 2 kilos off of him today, but his blood pressure dipped a little during dialysis so they backed off a little. The oscillator is still parked outside his door. His blood gases have been on the fence the past few days, and Dr. Cornfield thought he might benefit from it, but he held off to see if today's dialysis would make a difference. It seems to have done just that, as his vent settings were turned down a bit tonight after having been turned up last night. It is a constant seesaw. He will be dialyzed again early tomorrow morning. Since last night he has been bleeding at the site of the new catheter. He was re-stitched two times today and it finally looks like it is going to hold. His blood pressure has been all over the place today, and at times he has been quite uncomfortable.
Keeping in mind the seriousness of Max's lung and kidney issues, Mike and I are mostly concerned about Max's GVHD. New redness on his legs and arms which appeared a few days ago has everyone concerned. We are praying it is a drug reaction, but with his extensive history GVH is the likely suspect. His immune system is already very suppressed from the GVH and the many treatments he has received for it so far. He is extremely susceptible to infection right now and further treatment would make him even more vulnerable. The doctor told us that it is not the GVH which kills you, it is the infection you get when you are vulnerable. This is all very hard to deal with, and we were desperate for the last round of ATG to stop it once and for good.
It has been an emotional day for us. All of the stress from the events of the past few days caught up a bit. Yesterday's surgery and dialysis went very well but it was scary. All of the emotions experienced while taking care of Max in this setting also took a toll tonight. How do I put this? We have been feeling lonely. You are probably asking yourself, how can this be, with all of the support that so many people have showed this past week? Our loneliness stems from the fact that we have the sickest child on 4A, and one of the sickest children at the RMH. People don't know what to say to us, and at times even have a hard time looking at us. When we walked out of the room with Max yesterday to take him down to surgery everyone at the desk got quiet and some people looked away. When we took him down to CT last week people in the hospital were gaping at us and it was all I could do to shout, "This is my son, he is not a spectacle!" The past few months on 4A have been very difficult for the staff. Many children have died, and Max is now the last one of the "really sick" patients who is here. We have been getting the sense from some that they do not want to be in our room, not because they do not like Max or us, but because it is a hard place to be. But no one knows that better than us, and no one knows it better than Max.
At times we worry that people have given up hope, that they know he is going to die. We struggle with these feelings every day. But Max keeps on trying so we have to too. We feel it is an honor to take care of him, not just because he is our son, but because he is such a strong and courageous person. How could you not want to help him? He has been lying in bed for almost 3 months now just waiting for us to save him. He looks terrible. He is puffy, bloody, rashy and hairy, but he is still MAX. And if he is going to die, then that is even more reason to take better care of him. He has earned it. He deserves only the best.
Please do not misunderstand me. Max has received excellent care here. We are so grateful. It means so much when nurses who are not assigned to Max stop by just to see him. And to the staff who cares for him every day, you have no idea what a gift you give us. You give Max dignity. One respiratory therapist recently went above and beyond and it meant so much to me. She said, "you treat them like they were your own." How true.
Despite how hard this all is, we are still in a better place than some, and we think about this constantly. Yet we are not at all where we thought we would be. This is just not how things were supposed to go. He has had such a hard life, he deserves better.
Now, I know I have rambled, and I have succumbed to writing an emotional update. We try to stay away from doing this for a few reasons. Believe it or not, we have received complaints when we have done this is the past, and at this point we cannot deal with the negative judgments of others. But, here it is. Take it or leave it I guess!
In other news, we had several nice things happen yesterday too. When Grace woke up yesterday she asked if we could have a family day. So, Mike's mom and aunt sat with Max while Mike and I took Grace to dinner at her favorite Minnesota restaurant, Appleby's. She loves it because they give her a balloon, although this time the hostess skipped the balloon but asked Grace if she smoked. Yep, that is right, I guess she was trying to be funny (nice). Inappropriate comments aside, we had a nice time at dinner and we both returned to the RMH with Grace. We all climbed in bed together to watch a movie. This is something we have not done in over 3 months. Grace and Mike both fell asleep, I think I may have too for a few minutes.
We also had 2 special deliveries for Max yesterday. Two different former 4A families returned to the unit and distributed toys for the kids. The one toy did not have a tag on it, but the other was from the Hope for Henry Foundation. If Max was awake he would love playing with the "Little People" toys, and I can see him chewing on one of them right now. Maybe some day ...
Finally (boy this update is long), we must thank Aunt Nancy for staying with us this week. Grace loved her and so did the other kids at RMH. She was such a great help to us, and we were especially grateful for her presence during the events of the past few days. She was more than a little sad to leave Max last night, and we were all sad to see her go. Thanks Nancy!
-Margaret
posted by Mike Ciacciarelli
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