Day +69
WBC 13.0
It's been a busy day so I'll try to be informative and brief. Brevity is hard when your kid is sick, and you've been known to have trouble finding the brake on the keyboard.
Max has fevers even on top of all the antibiotics he's on. And his x-rays show some new "infiltrates" in the middle of his right lung. This could be an area of collapse. Or if in case these two suspects are working together, the best explanation is a fungal infection (very serious in the lungs). He's been put on an anti-fungal medicine called Abelcet that has some crazy side effects. The worst of these is severe "chills" usually manifested in shakes so that just makes the seizure monitoring that much more difficult. I stayed up tonight to watch for these reactions, and so far so good, no reaction.
On the seizure front, Dr. Charnas, Max's neurologist came by today and performed another EEG. While he wasn't having seizures actively, there were still some worrisome areas of activity and he put him on a new med. What's great about this med though is that it comes in "sprinkles" and gets spooned in with applesauce. Max is eating it up just fine. He will do another EEG to watch for seizures on Friday. He's been a lot more awake lately, and today we thought we saw his eyes cross a little and maybe move with a little more determination. He's still not engaging anything or tracking anything, though.
I took Max down for a CT scan of his lungs today and because the machine is so fast, we also got a CT of his abdomen and pelvis. The pulmonary team is going to study the lung CT and see how it will define his treatment. Dr. Milla still wants to put Max on CPAP, a way of forcing positive pressure into Max's airways without having to vent him. Most kids hate this, and Max was put on this a while ago in a last ditch attempt to keep him off the vent. Didn't work. But this is being done more electively and the hope is that the positive pressure can open Max's lungs up in the way that the vent does, but with out having to vent him. Get it? We're scared that this will aggravate him and cause more problems.
His gut and skin remain the same and the new immunosuppressant, MMF, won't show changes for at least a week. Today's abdomen and pelvis CTs should offer some more information for the docs in this fight. All CT results will come back by noon on Thursday.
Thanks for all the support of Max, and for all of the guestbook entries that my Dad's letter inspired. It was nice to read so many little notes in one day. We are so lucky for all of the wonderful support that we have. Please pray for Cecelia, Max's secret girlfriend who is much sicker than Max and has been fighting for her life for much longer. She really needs your support!
Have a good day,
Mike
It's been a busy day so I'll try to be informative and brief. Brevity is hard when your kid is sick, and you've been known to have trouble finding the brake on the keyboard.
Max has fevers even on top of all the antibiotics he's on. And his x-rays show some new "infiltrates" in the middle of his right lung. This could be an area of collapse. Or if in case these two suspects are working together, the best explanation is a fungal infection (very serious in the lungs). He's been put on an anti-fungal medicine called Abelcet that has some crazy side effects. The worst of these is severe "chills" usually manifested in shakes so that just makes the seizure monitoring that much more difficult. I stayed up tonight to watch for these reactions, and so far so good, no reaction.
On the seizure front, Dr. Charnas, Max's neurologist came by today and performed another EEG. While he wasn't having seizures actively, there were still some worrisome areas of activity and he put him on a new med. What's great about this med though is that it comes in "sprinkles" and gets spooned in with applesauce. Max is eating it up just fine. He will do another EEG to watch for seizures on Friday. He's been a lot more awake lately, and today we thought we saw his eyes cross a little and maybe move with a little more determination. He's still not engaging anything or tracking anything, though.
I took Max down for a CT scan of his lungs today and because the machine is so fast, we also got a CT of his abdomen and pelvis. The pulmonary team is going to study the lung CT and see how it will define his treatment. Dr. Milla still wants to put Max on CPAP, a way of forcing positive pressure into Max's airways without having to vent him. Most kids hate this, and Max was put on this a while ago in a last ditch attempt to keep him off the vent. Didn't work. But this is being done more electively and the hope is that the positive pressure can open Max's lungs up in the way that the vent does, but with out having to vent him. Get it? We're scared that this will aggravate him and cause more problems.
His gut and skin remain the same and the new immunosuppressant, MMF, won't show changes for at least a week. Today's abdomen and pelvis CTs should offer some more information for the docs in this fight. All CT results will come back by noon on Thursday.
Thanks for all the support of Max, and for all of the guestbook entries that my Dad's letter inspired. It was nice to read so many little notes in one day. We are so lucky for all of the wonderful support that we have. Please pray for Cecelia, Max's secret girlfriend who is much sicker than Max and has been fighting for her life for much longer. She really needs your support!
Have a good day,
Mike
posted by Mike Ciacciarelli
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