Day +101
WBC 10.4
Max has had a rough couple of days. The biggest problem is maintaining adequate blood pressure. They have him on the maximum dose of Dopamine for this, and they are running out of options. There is no real good explanation for this except for seizures or infection. Today Max gets a day off from dialysis which means it will be the first time in over a week his kidneys have had to go it alone. His blood pressure status would probably not allow for dialysis anyway. We'll know more of the severity of his kidney problems by tomorrow. Neurology will come and observe him for seizures this morning.
We've been up most of the night asking ourselves the most difficult questions possible. We are worried that the paralytic they have Max on is masking pain. If so, it's possible he's been in horrible pain for quite a while now and we haven't known it. We are asking the doctors to critically assess all aspects of Max today. They do this in the general sense, but they rely on nursing and mom and dad to tell the general kind of care news. Today we asked the doctors to clinically observe him and to tell us his pain status.
Our son has suffered so much and is still suffering. His tube from his stomach is continually bringing up old blood and bile and it makes us think his stomach is rotting from the inside out. We were given a book that very carefully explains the physical and medical processes of death. Both Margaret and I read this and came to the same conclusion: This book is what is happening to Max. Max is dying. That may seem obvious to many readers of these updates, but for us it has taken a long time to reach that conclusion and to try and accept it. Every process in his body is showing signs of death. He has been very patient, he has made some wonderful achievements, but he may have too many injuries to overcome. If the end is determined we do not want to be in his way because of our hopes and dreams.
We were supposed to have a big team meeting on Tuesday with docs from ICU, BMT, pulmonary, neurology, and maybe renal. But we don't know if Max can make it to Tuesday. So we will try to talk to as many people as we can today.
Last night when I hustled over to the hospital from sleeping by the phone at the Ronald McDonald House, I came off the elevator and heard "Silent Night." It was coming from one of the house's Christmas decorations. I was zipping through the park as fast as I could. Snow was falling, and it was a silent night, indeed. Outside it was beautiful and the song was in my ears: "Holy infant, so tender and mild. Sleep in heavenly peace. Sleep in heavenly peace."
Please continue to hope and pray for our son. Another boy who was on our unit for leukemia passed away at his home last night. Their daughter and Grace were both Belle for Halloween at the house.
Safe inside the hospital with a blizzard outside,
Mike
Max has had a rough couple of days. The biggest problem is maintaining adequate blood pressure. They have him on the maximum dose of Dopamine for this, and they are running out of options. There is no real good explanation for this except for seizures or infection. Today Max gets a day off from dialysis which means it will be the first time in over a week his kidneys have had to go it alone. His blood pressure status would probably not allow for dialysis anyway. We'll know more of the severity of his kidney problems by tomorrow. Neurology will come and observe him for seizures this morning.
We've been up most of the night asking ourselves the most difficult questions possible. We are worried that the paralytic they have Max on is masking pain. If so, it's possible he's been in horrible pain for quite a while now and we haven't known it. We are asking the doctors to critically assess all aspects of Max today. They do this in the general sense, but they rely on nursing and mom and dad to tell the general kind of care news. Today we asked the doctors to clinically observe him and to tell us his pain status.
Our son has suffered so much and is still suffering. His tube from his stomach is continually bringing up old blood and bile and it makes us think his stomach is rotting from the inside out. We were given a book that very carefully explains the physical and medical processes of death. Both Margaret and I read this and came to the same conclusion: This book is what is happening to Max. Max is dying. That may seem obvious to many readers of these updates, but for us it has taken a long time to reach that conclusion and to try and accept it. Every process in his body is showing signs of death. He has been very patient, he has made some wonderful achievements, but he may have too many injuries to overcome. If the end is determined we do not want to be in his way because of our hopes and dreams.
We were supposed to have a big team meeting on Tuesday with docs from ICU, BMT, pulmonary, neurology, and maybe renal. But we don't know if Max can make it to Tuesday. So we will try to talk to as many people as we can today.
Last night when I hustled over to the hospital from sleeping by the phone at the Ronald McDonald House, I came off the elevator and heard "Silent Night." It was coming from one of the house's Christmas decorations. I was zipping through the park as fast as I could. Snow was falling, and it was a silent night, indeed. Outside it was beautiful and the song was in my ears: "Holy infant, so tender and mild. Sleep in heavenly peace. Sleep in heavenly peace."
Please continue to hope and pray for our son. Another boy who was on our unit for leukemia passed away at his home last night. Their daughter and Grace were both Belle for Halloween at the house.
Safe inside the hospital with a blizzard outside,
Mike
posted by Mike Ciacciarelli
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