It's been a tough week on the Make-a-Wish front. Peter's hematologist, who approved the Make-a-Wish trip to Orlando 2 months ago without even THINKING about platelets, is now saying that he will not allow Peter to ride anything at all unless his platelets are at least 50.
He says the platelet infusion will only last 2 days but before riding anything the 2nd day, Peter needs to have blood counts done. Counts every 48 hours.
The M-a-W village is in Kissimmee, not far from the parks but a long way from the city of Orlando. The hospital that M-a-W recommends is Arnold Palmer Children's Hospital in Orlando. It sounds marvelous, but it's 25-30 miles from the M-a-W village, in the middle of the city, and we've been advised that the platelet infusion will take most of a day (including travel time, parking, registration, typing and matching, waiting for the platelets to be delivered, inserting the IV, waiting for the platelets to infuse, waiting to make sure there's no allergic reaction, and then driving back out to Kissimmee).
As for getting a blood count done, considering the location of the hospital, it will eat up at least half a day each time. He wants us to do it 3 times, plus spending a day getting a platelet infusion.
So the way it appears, we will be spending most of our time in Florida at a hospital. And yet:
WE DELIBERATELY CHOSE THE PATH WE ARE ON TO AVOID HOSPITALS!
We haven't even been in a doctor's office in months. Now Peter gets a trip of a lifetime and is expected to spend most of it at a hospital?
I burst into tears when talking with the nurse (the doc has been too busy to talk) and she said, "Well, tell him he can do everything else but he can't take rides. That's just the way it is." Right -- so YOU tell him, and then tell him again each time he sees a ride he can't go on. You explain to him why it's the way it is. He doesn't even understand that he's sick! He doesn't have any limitations here at home.
She said, "Lots of kids at Make-a-Wish are too sick to go to the parks. Everyone says that the village itself is a whole lot of fun. So, if it's going to bother him, just stay in the village." My problem? He's not too sick to go to the parks. He feels absolutely fine.
We could have chosen a different wish if the doc had raised any concern. We could have set expectations about avoiding exciting rides if the doc had raised any concern. As far as I can tell, no one looked at his chart and thought about him at all before approving the trip. In fact, had I not called started asking questions because I had developed concerns on my own, we would have gone to Orlando without any knowledge of risk.
Not only that -- Peter went to the 4th of July carnival in our town just a few weeks ago and rode rides all afternoon. No one ever told us any different. And, to be honest, he's had platelet levels <50 for at least 3.5 years, and we only found out about it last November. He's been to ... hmmm ... maybe 5 carnivals in that time?
I'm not trying to convince myself that this isn't a life-threatening danger, because it is. I've done the reading. He really could have a bleed in his brain. He really could die. So, hard as it will be, I'm willing to follow a modified plan:
-- Get the platelets on Sunday (though Peter will need Ativan as always to get through IV insertion and not rip the needle out of his arm).
He says the platelet infusion will only last 2 days but before riding anything the 2nd day, Peter needs to have blood counts done. Counts every 48 hours.
The M-a-W village is in Kissimmee, not far from the parks but a long way from the city of Orlando. The hospital that M-a-W recommends is Arnold Palmer Children's Hospital in Orlando. It sounds marvelous, but it's 25-30 miles from the M-a-W village, in the middle of the city, and we've been advised that the platelet infusion will take most of a day (including travel time, parking, registration, typing and matching, waiting for the platelets to be delivered, inserting the IV, waiting for the platelets to infuse, waiting to make sure there's no allergic reaction, and then driving back out to Kissimmee).
As for getting a blood count done, considering the location of the hospital, it will eat up at least half a day each time. He wants us to do it 3 times, plus spending a day getting a platelet infusion.
So the way it appears, we will be spending most of our time in Florida at a hospital. And yet:
WE DELIBERATELY CHOSE THE PATH WE ARE ON TO AVOID HOSPITALS!
We haven't even been in a doctor's office in months. Now Peter gets a trip of a lifetime and is expected to spend most of it at a hospital?
I burst into tears when talking with the nurse (the doc has been too busy to talk) and she said, "Well, tell him he can do everything else but he can't take rides. That's just the way it is." Right -- so YOU tell him, and then tell him again each time he sees a ride he can't go on. You explain to him why it's the way it is. He doesn't even understand that he's sick! He doesn't have any limitations here at home.
She said, "Lots of kids at Make-a-Wish are too sick to go to the parks. Everyone says that the village itself is a whole lot of fun. So, if it's going to bother him, just stay in the village." My problem? He's not too sick to go to the parks. He feels absolutely fine.
We could have chosen a different wish if the doc had raised any concern. We could have set expectations about avoiding exciting rides if the doc had raised any concern. As far as I can tell, no one looked at his chart and thought about him at all before approving the trip. In fact, had I not called started asking questions because I had developed concerns on my own, we would have gone to Orlando without any knowledge of risk.
Not only that -- Peter went to the 4th of July carnival in our town just a few weeks ago and rode rides all afternoon. No one ever told us any different. And, to be honest, he's had platelet levels <50 for at least 3.5 years, and we only found out about it last November. He's been to ... hmmm ... maybe 5 carnivals in that time?
I'm not trying to convince myself that this isn't a life-threatening danger, because it is. I've done the reading. He really could have a bleed in his brain. He really could die. So, hard as it will be, I'm willing to follow a modified plan:
-- Get the platelets on Sunday (though Peter will need Ativan as always to get through IV insertion and not rip the needle out of his arm).
-- Do rides on Monday and Tuesday.
-- No rides on Wednesday.
-- Platelets on Thursday (more sedative to get through the procedure ... never mind the screaming all the way there and the crying the night before).
-- Do rides on Friday and Saturday.
-- No rides on Sunday.
If I try to discuss this with Peter in advance, it'll just end in a screaming fit. But it doesn't matter whether we discuss it in advance or not. On Wednesday and Sunday, if we walk past a ride he wants to go on and I tell him again that he can't do it, he will beg and shriek and cry. He will be heartbroken. But I'm willing to gut it out to keep him reasonably safe. Two days with no rides and most of a day in the hospital. What I'm NOT willing to do is lose big parts of two additional days driving an hour each way to get blood counts done and then waiting for the results.
The doctor's nurse said, "Well, that's what the doctor says he wants, otherwise he's not going to let you go".
Oh really? He's not? Why didn't he speak up months ago? (I imagine he feels fairly panicked realizing -- once I brought the issue to the table -- that he approved the trip without thinking).
The thing is, the one thing that we have always emphasized to the doctor, and that's he's acknowledged and said he honored, is that we don't want Peter to live like a sick boy. That's why Peter goes to gym class. That's why he rides his bike. We chose this path for a reason. And we could have avoided tranquilizing him for platelets, spending most of a day in Florida getting more platelets (and tranquilizing him again) if there had been any foresight.
So now Peter gets "no, you can't do that, your blood is sick" and "sorry, we can't go to a park that day, you need platelets". And I'm the one who has to deliver that message, and hear him sob. He has bipolar disorder. He will rage and sob and scream and curse. He'll shriek "I HATE YOU!" to me over and over. He won't let anyone comfort him. His brother and sister will be embarrassed. It could go on for an hour, or even more. And not just once. It could happen several times.
We've told him over and over that this time, he can go on rides as much as he wants. I DIDN'T HAVE TO SAY THAT TO HIM! WHY DIDN'T SOMEBODY TELL ME??? WE DIDN'T HAVE TO BE DOING THIS!
We've chosen no interventions + palliative care for Peter when the time comes. In late May, his counts had unexpectedly gone up so much that the doc said we didn't need to see him for 3 or 4 months. If we were opting for aggressive treatment, we'd be in the doc's face. There's no way he would have approved the trip without bringing up the platelets issue.
We didn't have to plan this trip at all. Peter lives as a normal boy in his daily life. This trip will end up being all about being sick, about things he can't do. Yeah, there are lots of great things to do there, and yeah, he will enjoy some of them. But he will also cry a lot, and rage a lot. He shouldn't have to do that on his Make-a-Wish trip.
But ... I'm told that letting him ride a roller coaster is life-threatening. How can I ignore that? I love my son. Right now we don't see a particular limit on his time. He's most likely to die from an infection --eventually -- but right now his white count is pretty good. He could live for a year or two or three. So being dogmatic about this -- "he gets to do whatever he wants, damn the torpedos" feels like child abuse. He's happy in his life. He's not able to assess the risks. That's what a parent is for.
And then there's the idea of actually seeing him go up in the roller coaster and wondering if this will be his last day on earth. And blaming myself if it is. Because he will have gone to Florida as a healthy boy and come back dead, and it would have been entirely avoidable.
If you have a kid who is allergic to peanuts, you don't create a situation where you've promised him over and over that for once in his life, he can eat what everybody else does and then have to tell him -- while he sees everyone else eating peanuts -- that oops, he's sick, the doctor says he can't have them.
Though I am very torn up about all of this, I'm pretty comfortable with my revised plan. One day in the hospital for platelets, and probably we can get in some park time in the late afternoon and evening. Two "no ride" days. It will be hard, both for me and for Peter, but even that hinges on one critical factor.
Peter's insurance is Illinois Medicaid. He hasn't had any other insurance since we starting seeing our hematologist. We have trouble finding medical providers HERE IN ILLINOIS who will take Medicaid. Now what are the chances that Arnold Palmer Children's Hospital in Orlando will take Illinois Medicaid for a platelet infusion?
I have a call in to the hospital. I expect to hear from them tomorrow. I know they would take him into their E.R. if his condition was critical, but I can't imagine that they have ANY way to recover $$ from the state of Illinois for a pre-planned platelet infusion.
I can't avoid the question now and throw myself on their mercy later, because I have to know if we're going to get platelets or not. We can't go all the way to the hospital and be turned away.
I had a good cry in the ladies room at work this afternoon, and if we can't get platelets in Florida, tomorrow is going to be a pretty big washout. I am made of strong stuff but this just breaks me. Give a kid a chance to dream and then shatter it? Screw that.
If I try to discuss this with Peter in advance, it'll just end in a screaming fit. But it doesn't matter whether we discuss it in advance or not. On Wednesday and Sunday, if we walk past a ride he wants to go on and I tell him again that he can't do it, he will beg and shriek and cry. He will be heartbroken. But I'm willing to gut it out to keep him reasonably safe. Two days with no rides and most of a day in the hospital. What I'm NOT willing to do is lose big parts of two additional days driving an hour each way to get blood counts done and then waiting for the results.
The doctor's nurse said, "Well, that's what the doctor says he wants, otherwise he's not going to let you go".
Oh really? He's not? Why didn't he speak up months ago? (I imagine he feels fairly panicked realizing -- once I brought the issue to the table -- that he approved the trip without thinking).
The thing is, the one thing that we have always emphasized to the doctor, and that's he's acknowledged and said he honored, is that we don't want Peter to live like a sick boy. That's why Peter goes to gym class. That's why he rides his bike. We chose this path for a reason. And we could have avoided tranquilizing him for platelets, spending most of a day in Florida getting more platelets (and tranquilizing him again) if there had been any foresight.
So now Peter gets "no, you can't do that, your blood is sick" and "sorry, we can't go to a park that day, you need platelets". And I'm the one who has to deliver that message, and hear him sob. He has bipolar disorder. He will rage and sob and scream and curse. He'll shriek "I HATE YOU!" to me over and over. He won't let anyone comfort him. His brother and sister will be embarrassed. It could go on for an hour, or even more. And not just once. It could happen several times.
We've told him over and over that this time, he can go on rides as much as he wants. I DIDN'T HAVE TO SAY THAT TO HIM! WHY DIDN'T SOMEBODY TELL ME??? WE DIDN'T HAVE TO BE DOING THIS!
We've chosen no interventions + palliative care for Peter when the time comes. In late May, his counts had unexpectedly gone up so much that the doc said we didn't need to see him for 3 or 4 months. If we were opting for aggressive treatment, we'd be in the doc's face. There's no way he would have approved the trip without bringing up the platelets issue.
We didn't have to plan this trip at all. Peter lives as a normal boy in his daily life. This trip will end up being all about being sick, about things he can't do. Yeah, there are lots of great things to do there, and yeah, he will enjoy some of them. But he will also cry a lot, and rage a lot. He shouldn't have to do that on his Make-a-Wish trip.
But ... I'm told that letting him ride a roller coaster is life-threatening. How can I ignore that? I love my son. Right now we don't see a particular limit on his time. He's most likely to die from an infection --eventually -- but right now his white count is pretty good. He could live for a year or two or three. So being dogmatic about this -- "he gets to do whatever he wants, damn the torpedos" feels like child abuse. He's happy in his life. He's not able to assess the risks. That's what a parent is for.
And then there's the idea of actually seeing him go up in the roller coaster and wondering if this will be his last day on earth. And blaming myself if it is. Because he will have gone to Florida as a healthy boy and come back dead, and it would have been entirely avoidable.
If you have a kid who is allergic to peanuts, you don't create a situation where you've promised him over and over that for once in his life, he can eat what everybody else does and then have to tell him -- while he sees everyone else eating peanuts -- that oops, he's sick, the doctor says he can't have them.
Though I am very torn up about all of this, I'm pretty comfortable with my revised plan. One day in the hospital for platelets, and probably we can get in some park time in the late afternoon and evening. Two "no ride" days. It will be hard, both for me and for Peter, but even that hinges on one critical factor.
Peter's insurance is Illinois Medicaid. He hasn't had any other insurance since we starting seeing our hematologist. We have trouble finding medical providers HERE IN ILLINOIS who will take Medicaid. Now what are the chances that Arnold Palmer Children's Hospital in Orlando will take Illinois Medicaid for a platelet infusion?
I have a call in to the hospital. I expect to hear from them tomorrow. I know they would take him into their E.R. if his condition was critical, but I can't imagine that they have ANY way to recover $$ from the state of Illinois for a pre-planned platelet infusion.
I can't avoid the question now and throw myself on their mercy later, because I have to know if we're going to get platelets or not. We can't go all the way to the hospital and be turned away.
I had a good cry in the ladies room at work this afternoon, and if we can't get platelets in Florida, tomorrow is going to be a pretty big washout. I am made of strong stuff but this just breaks me. Give a kid a chance to dream and then shatter it? Screw that.
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