Day +62
WBC 11.3
The brain, the brain, the scary brain. The plan was to give Max as much anti-seizure meds as they can give him without compromising his breathing. Tonight they hooked up his head to the EEG and it showed major improvement but intermittent seizure activity. They have not stopped yet. There is still one med that has a level that needs to come up and the neurologist feels this might get him over the hump. The nurses and resident here tonight, on the other hand, feel that that one more bump might put him back on the vent. The idea of a fourth vent is sickening to our stomachs, but they've got to get the seizures under control. We've been told that the brain comes first, lungs second. Putting Max on the vent for the fourth time is nobody's goal, but a reality because if tonight's dosages don't do the trick, tomorrow they will need to start other meds that will definitely require the ventilator.
How sedate is he at this point? He's pretty much out cold. He's breathing only about 15 times per minute, and he doesn't even come close to coughing, even when they suction him. He's got no interest in swallowing, and the bottles are out, and a tube may need to go in for oral meds. He's not even stooling, so who knows how his gvhd is doing. His skin is still rashy though, but really, that's the least of our problems.
What's causing the seizures? No one knows.
It's been a hard couple of days. In addition to learning that Max is having seizures, we've had to say goodbye to Kendall and her family. As most readers of this site know, Kendall is 5 and is Grace's best Ronald McDonald House friend and we met them when we first got to the House. Kendall had AML, and was transplanted about a week before Max. Every time Grace visited her brother, she checked on Kendall. Both Kendall and Grace looked forward to the day Kendall could come home from the hospital. She received the news she was 100% engrafted about a month ago, and returned to the house a couple of weeks ago feeling like a champion, and her parents were beaming with pride. She and Grace were able to play a few times in each other's rooms and shared toys and watched movies together. They were the featured friends for the house holiday card. Last week they found out that she is no longer engrafted, and her leukemia is back. This was unexpected, and thoroughly devastating. It is back so aggressively, in fact, that the family was told that no one in her situation had survived to make it to another transplant. Her family made the very difficult decision to bring Kendall back to Florida to be with some family and friends. Her mom told us that she wanted Kendall to see the beach again, and not lose her fight out here in the gray of Minnesota winter.
We have so much love and respect for tough-as-nails Kendall, her brave parents Marnie & Dale, and their wonderfully compassionate son Ty, that we are beside ourselves with grief for this outcome. Yesterday Kendall got enough blood and platelets to make it home, and hospice will care for her after that. They do not have a website, and have tried to keep their situation as close-knit as possible. We've known the news for some time, but until they left, there was some solace in being able to see them. Kendall gave Grace most of her old toys, and Grace has been playing with them. They don't know how much longer Kendall will live, but it will not be long. Grace knows Kendall will not ever be coming back to Minnesota and she is very sad. Today she also asked Margaret if Max was going to die. I think she got scared seeing so many wires coming out of the top of his head. She knows that you go to heaven when you die, and she know that you're not sick when you get there. I told her that, and I hope it is true. Kendall is an amazing girl, and was the perfect match for Grace's spunk and attitude. Margaret and I would both consider ourselves lucky to have had Kendall for a daughter, and in about a year and half, we will have a close facsimile for sure.
Kendall, we love you so much. You are so brave, and Grace misses you already. Marnie & Dale, somehow, in the middle of all this, you came into our lives in such a deep way. We love you for wanting to make every day you have left with Kendall special and beautiful. You understood our fears like no one else could, and we hope we can understand your fears and loss and provide some compassion in your time of need.
That's it for tonight, I'm sending this with the hope Max will remain off the vent and that his seizures will stop. He's such a tough kid.
Did I mention the Cubs?
--mike
The brain, the brain, the scary brain. The plan was to give Max as much anti-seizure meds as they can give him without compromising his breathing. Tonight they hooked up his head to the EEG and it showed major improvement but intermittent seizure activity. They have not stopped yet. There is still one med that has a level that needs to come up and the neurologist feels this might get him over the hump. The nurses and resident here tonight, on the other hand, feel that that one more bump might put him back on the vent. The idea of a fourth vent is sickening to our stomachs, but they've got to get the seizures under control. We've been told that the brain comes first, lungs second. Putting Max on the vent for the fourth time is nobody's goal, but a reality because if tonight's dosages don't do the trick, tomorrow they will need to start other meds that will definitely require the ventilator.
How sedate is he at this point? He's pretty much out cold. He's breathing only about 15 times per minute, and he doesn't even come close to coughing, even when they suction him. He's got no interest in swallowing, and the bottles are out, and a tube may need to go in for oral meds. He's not even stooling, so who knows how his gvhd is doing. His skin is still rashy though, but really, that's the least of our problems.
What's causing the seizures? No one knows.
It's been a hard couple of days. In addition to learning that Max is having seizures, we've had to say goodbye to Kendall and her family. As most readers of this site know, Kendall is 5 and is Grace's best Ronald McDonald House friend and we met them when we first got to the House. Kendall had AML, and was transplanted about a week before Max. Every time Grace visited her brother, she checked on Kendall. Both Kendall and Grace looked forward to the day Kendall could come home from the hospital. She received the news she was 100% engrafted about a month ago, and returned to the house a couple of weeks ago feeling like a champion, and her parents were beaming with pride. She and Grace were able to play a few times in each other's rooms and shared toys and watched movies together. They were the featured friends for the house holiday card. Last week they found out that she is no longer engrafted, and her leukemia is back. This was unexpected, and thoroughly devastating. It is back so aggressively, in fact, that the family was told that no one in her situation had survived to make it to another transplant. Her family made the very difficult decision to bring Kendall back to Florida to be with some family and friends. Her mom told us that she wanted Kendall to see the beach again, and not lose her fight out here in the gray of Minnesota winter.
We have so much love and respect for tough-as-nails Kendall, her brave parents Marnie & Dale, and their wonderfully compassionate son Ty, that we are beside ourselves with grief for this outcome. Yesterday Kendall got enough blood and platelets to make it home, and hospice will care for her after that. They do not have a website, and have tried to keep their situation as close-knit as possible. We've known the news for some time, but until they left, there was some solace in being able to see them. Kendall gave Grace most of her old toys, and Grace has been playing with them. They don't know how much longer Kendall will live, but it will not be long. Grace knows Kendall will not ever be coming back to Minnesota and she is very sad. Today she also asked Margaret if Max was going to die. I think she got scared seeing so many wires coming out of the top of his head. She knows that you go to heaven when you die, and she know that you're not sick when you get there. I told her that, and I hope it is true. Kendall is an amazing girl, and was the perfect match for Grace's spunk and attitude. Margaret and I would both consider ourselves lucky to have had Kendall for a daughter, and in about a year and half, we will have a close facsimile for sure.
Kendall, we love you so much. You are so brave, and Grace misses you already. Marnie & Dale, somehow, in the middle of all this, you came into our lives in such a deep way. We love you for wanting to make every day you have left with Kendall special and beautiful. You understood our fears like no one else could, and we hope we can understand your fears and loss and provide some compassion in your time of need.
That's it for tonight, I'm sending this with the hope Max will remain off the vent and that his seizures will stop. He's such a tough kid.
Did I mention the Cubs?
--mike
posted by Mike Ciacciarelli
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