Day +74
WBC 12.5
To be quite honest, I don't really feel like typing an update tonight. So many things have happened over the past few days it is getting hard to remember all of them, and I am drained. But, we know there are so many people out there who check on Max and worry about him. We appreciate you so much and I wouldn't want you to worry more if you didn't see an update.
Today we added the pediatric renal team to our list of specialist following Max. He is so swollen with fluid and just cannot seem to urinate it all out. They ordered some tests and did an ultrasound of his kidneys. The results are not back yet, but the docs are guessing that his kidneys took a hit when his lungs were bleeding and they were deprived of oxygen. In a healthy person this would usually resolve itself, but we all know Max is not healthy so they are not sure what will happen. If the test results show something else is going on or if he doesn't make any progress, he will be put on dialysis and the fluid would be drawn off. This would involve him getting a new central line put in, which means surgery. If his fluid status starts impacting his breathing more they will have to move sooner rather than later.
As for his lungs, they have continued to wean him off the oscillator little by little. Once he hits certain settings he will be moved to a conventional vent. There is no real hurry to do this, as this vent is not hurting him. However, they would be able to do more tests on him on the conventional vent. All of the bouncing on the oscillator makes it impossible for him to get an EEG and we therefore do not know where he stands seizure wise.
The big change today involves his GVHD. It has gotten better at different periods with certain medications, but overall it is very bad. His skin is as bad as it has ever been, and we do not know what is happening with his gut because everything has slowed down with all of his sedation. It comes down to this - one cannot continue to live with GVH as severe as Max's. They described it as Grade Four GVH, which is as bad as it gets. The GVH itself makes him vulnerable to many different infections and complications. It may be playing a role in his lungs and brain already, something they cannot test because biopsy would be too invasive. The treatments for GVH are risky, because they suppress his immune system and make him vulnerable as well. But we can wait and let him die of GVH or we can try something. So, Max will be getting a second course of rabbit ATG tonight and for the next three to four days. God help us, it has got to work.
I told the BMT fellow tonight (Eric, who has taken such good care of Max), that we did not want Max taken off the vent unless his GVH was under control. His sedation and pain medication has to be turned down when he is off the vent so his respiratory drive is not suppressed, and we do not want him to be uncomfortable. He agreed, and in fact had already discussed it with ICU. It was certainly one of the hardest conversations I will ever have in my life.
What is so hard is knowing that Max is inside there somewhere trying to get out. If he wakes up a little though, he works against the oscillator and it starts alarming. Tonight I was talking to him and touching him and the alarms were going off. The nurse told me to leave him be for a while and she had to give him a paralytic. It stinks that when he knows I am there and he wants to respond it has to be taken away.
Mike's brother-in-law Geoff is here for a couple of days and he sat with Max so Grace, Mike and I could attend a little Halloween party at the hospital. Grace got her face painted as a cat and she looked really, really cute. Geoff is leaving in the morning, but Mike's mom arrived tonight and my sister Katie comes on Halloween. With all the help Mike and I should be able to attend the RMH Halloween party with Grace on Friday.
Grace visited Max tonight and sat at the edge of his crib. She was so excited when his hand moved ever so slightly and she said Max would be waking up soon. She said he thought it was night time and that is why he was asleep. Of course she does not understand it all. Today she said she was going to take a picture with Kendall on Halloween, she still does not get that Kendall will not be coming back.
Please send a nice guest book message this week to Max's Hurler friend and our RMH neighbor Taylor who will be turning two on Friday. She went through two transplants and they have been at the RMH for a year and a half. She is totally blossoming and brightens up everyone's day when they see her. Her family has been a great help to us as well.
Good Night,
Margaret
To be quite honest, I don't really feel like typing an update tonight. So many things have happened over the past few days it is getting hard to remember all of them, and I am drained. But, we know there are so many people out there who check on Max and worry about him. We appreciate you so much and I wouldn't want you to worry more if you didn't see an update.
Today we added the pediatric renal team to our list of specialist following Max. He is so swollen with fluid and just cannot seem to urinate it all out. They ordered some tests and did an ultrasound of his kidneys. The results are not back yet, but the docs are guessing that his kidneys took a hit when his lungs were bleeding and they were deprived of oxygen. In a healthy person this would usually resolve itself, but we all know Max is not healthy so they are not sure what will happen. If the test results show something else is going on or if he doesn't make any progress, he will be put on dialysis and the fluid would be drawn off. This would involve him getting a new central line put in, which means surgery. If his fluid status starts impacting his breathing more they will have to move sooner rather than later.
As for his lungs, they have continued to wean him off the oscillator little by little. Once he hits certain settings he will be moved to a conventional vent. There is no real hurry to do this, as this vent is not hurting him. However, they would be able to do more tests on him on the conventional vent. All of the bouncing on the oscillator makes it impossible for him to get an EEG and we therefore do not know where he stands seizure wise.
The big change today involves his GVHD. It has gotten better at different periods with certain medications, but overall it is very bad. His skin is as bad as it has ever been, and we do not know what is happening with his gut because everything has slowed down with all of his sedation. It comes down to this - one cannot continue to live with GVH as severe as Max's. They described it as Grade Four GVH, which is as bad as it gets. The GVH itself makes him vulnerable to many different infections and complications. It may be playing a role in his lungs and brain already, something they cannot test because biopsy would be too invasive. The treatments for GVH are risky, because they suppress his immune system and make him vulnerable as well. But we can wait and let him die of GVH or we can try something. So, Max will be getting a second course of rabbit ATG tonight and for the next three to four days. God help us, it has got to work.
I told the BMT fellow tonight (Eric, who has taken such good care of Max), that we did not want Max taken off the vent unless his GVH was under control. His sedation and pain medication has to be turned down when he is off the vent so his respiratory drive is not suppressed, and we do not want him to be uncomfortable. He agreed, and in fact had already discussed it with ICU. It was certainly one of the hardest conversations I will ever have in my life.
What is so hard is knowing that Max is inside there somewhere trying to get out. If he wakes up a little though, he works against the oscillator and it starts alarming. Tonight I was talking to him and touching him and the alarms were going off. The nurse told me to leave him be for a while and she had to give him a paralytic. It stinks that when he knows I am there and he wants to respond it has to be taken away.
Mike's brother-in-law Geoff is here for a couple of days and he sat with Max so Grace, Mike and I could attend a little Halloween party at the hospital. Grace got her face painted as a cat and she looked really, really cute. Geoff is leaving in the morning, but Mike's mom arrived tonight and my sister Katie comes on Halloween. With all the help Mike and I should be able to attend the RMH Halloween party with Grace on Friday.
Grace visited Max tonight and sat at the edge of his crib. She was so excited when his hand moved ever so slightly and she said Max would be waking up soon. She said he thought it was night time and that is why he was asleep. Of course she does not understand it all. Today she said she was going to take a picture with Kendall on Halloween, she still does not get that Kendall will not be coming back.
Please send a nice guest book message this week to Max's Hurler friend and our RMH neighbor Taylor who will be turning two on Friday. She went through two transplants and they have been at the RMH for a year and a half. She is totally blossoming and brightens up everyone's day when they see her. Her family has been a great help to us as well.
Good Night,
Margaret
posted by Mike Ciacciarelli
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