Day +30
WBC 5.0
What a long, tough, day. Margaret was up most of the night trying to calm Max and keep him from getting too agitated. He had been having a lot of difficulty breathing in a relaxed state and his oxygen saturation was dropping frequently. By the morning the difficulty continued and she called for me to come over because she was so tired. Soon after I arrived Max began to have quite a bit of respiratory distress and things got pretty scary. Two ICU fellows, the BMT fellow and attending, and a respiratory therapist were soon in the room trying to figure out what to do. They decided to treat Max as if he was having a massive asthma attack.
First they suggested putting Max back on Bi-Pap and they even tried it but Max just fought it off. He was just too uncomfortable and the ICU docs felt that they really couldn't give him any more sedation. So, Max stayed on a basic mask. But they decided to put him on a continuous stream of Albuterol with 100% oxygen flowing in as well. As far as the breathing treatments, there's nowhere else to go. He can't get anymore oxygen and we can't call for a breathing treatment because he's on a constant one.
In addition they more than doubled his steroids hoping to open up his airways and they are changing from ATG (his medicine for Graft vs. Host) that was made inside a horse to ATG from a rabbit. This is to try and see if Max's body reacts differently to a different form of ATG.
So, where are we now? It's 11 o'clock and Max's saturations are finally a little more stable. But not much. His chest and belly are still heaving and he looks like he is working too hard. If he's having an asthma attack, he's been having it for 15 hours so far and one wonders how long this can last. Hopefully he will remain peaceful and acclimate to this situation. If so they can think about slowly weaning him down.
We are beginning to wonder how many times Max is going to pick himself up when it seems he is destined to be knocked down all the time. Finding out he had enzymes and getting extubated were great news. But the enzymes won't mean a thing if they don't get his GVH under control. And being extubated so far hasn't been wonderful. I've seen Max in excruciating pain with constant watery diarrhea, I've seen him feverish and throwing up everything that goes in him, I've seen him turn yellow and sickly from liver difficulties, I've seen him gain and lose weight from fluid imbalances, and I've seen him unable to maintain basic levels of blood pressure. And I've seen all of this in the last 2 weeks. But nothing compares to seeing your child struggle to breathe, the most basic and necessary of all functions. From across the room I can hear him wheeze now.
Let's be absolutely clear: Max has three huge problems:
He has an ongoing strep-like infection called VRE which is very difficult to get under control when immunosuppressed.
He has moderate GVH that has been tested positive in his gastrointestinal system but clearly is all over his skin and is probably affecting his liver.
Max has serious airway issues requiring just about everything but being put on a respirator (again). He is very sick. He is very uncomfortable. He still requires 24-hour ICU care.
I should be up most of the night, if there is any good news to report in the morning I will. Otherwise, it is very busy in the room these days, so updates may have to come a little slower. Then again it is Saturday night so we know our readership is down anyway.
---mike
What a long, tough, day. Margaret was up most of the night trying to calm Max and keep him from getting too agitated. He had been having a lot of difficulty breathing in a relaxed state and his oxygen saturation was dropping frequently. By the morning the difficulty continued and she called for me to come over because she was so tired. Soon after I arrived Max began to have quite a bit of respiratory distress and things got pretty scary. Two ICU fellows, the BMT fellow and attending, and a respiratory therapist were soon in the room trying to figure out what to do. They decided to treat Max as if he was having a massive asthma attack.
First they suggested putting Max back on Bi-Pap and they even tried it but Max just fought it off. He was just too uncomfortable and the ICU docs felt that they really couldn't give him any more sedation. So, Max stayed on a basic mask. But they decided to put him on a continuous stream of Albuterol with 100% oxygen flowing in as well. As far as the breathing treatments, there's nowhere else to go. He can't get anymore oxygen and we can't call for a breathing treatment because he's on a constant one.
In addition they more than doubled his steroids hoping to open up his airways and they are changing from ATG (his medicine for Graft vs. Host) that was made inside a horse to ATG from a rabbit. This is to try and see if Max's body reacts differently to a different form of ATG.
So, where are we now? It's 11 o'clock and Max's saturations are finally a little more stable. But not much. His chest and belly are still heaving and he looks like he is working too hard. If he's having an asthma attack, he's been having it for 15 hours so far and one wonders how long this can last. Hopefully he will remain peaceful and acclimate to this situation. If so they can think about slowly weaning him down.
We are beginning to wonder how many times Max is going to pick himself up when it seems he is destined to be knocked down all the time. Finding out he had enzymes and getting extubated were great news. But the enzymes won't mean a thing if they don't get his GVH under control. And being extubated so far hasn't been wonderful. I've seen Max in excruciating pain with constant watery diarrhea, I've seen him feverish and throwing up everything that goes in him, I've seen him turn yellow and sickly from liver difficulties, I've seen him gain and lose weight from fluid imbalances, and I've seen him unable to maintain basic levels of blood pressure. And I've seen all of this in the last 2 weeks. But nothing compares to seeing your child struggle to breathe, the most basic and necessary of all functions. From across the room I can hear him wheeze now.
Let's be absolutely clear: Max has three huge problems:
He has an ongoing strep-like infection called VRE which is very difficult to get under control when immunosuppressed.
He has moderate GVH that has been tested positive in his gastrointestinal system but clearly is all over his skin and is probably affecting his liver.
Max has serious airway issues requiring just about everything but being put on a respirator (again). He is very sick. He is very uncomfortable. He still requires 24-hour ICU care.
I should be up most of the night, if there is any good news to report in the morning I will. Otherwise, it is very busy in the room these days, so updates may have to come a little slower. Then again it is Saturday night so we know our readership is down anyway.
---mike
posted by Mike Ciacciarelli
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