Halloween... in the hospital
It's been quite the last 48 hours. I'm tired. J. is even more tired. R. is tired. Probably my older children are tired from playing parent for two days.
Two nights ago, Monday night, R. surprised us with a big seizure. There was nothing that would indicate one was coming. J. moved her into our room, hoping we would sleep. We did, fitfully, because she proceeded to have three more big seizures during the night. Tuesday morning she was a little dazed as is to be expected, and then had one more big seizure. I thought perhaps that was it, and had her sitting in a chair under a blanket to begin to recover. Of course, the five minutes I leave the room to go to the bathroom, R. starts in on her psychotic behavior, trying to throw anything within reach. I was called by children who were doing a great job of removing any potential projectiles.
It looked as though life was heading south pretty quickly so I called J., admitted I had no margin, and then burst into sobs when he asked if he should come home. (I am still concerned about my mom, and there is only so much stress and worry a person can manage, it seems.) J. correctly interpreted his sobbing wife as needing him, so he packed up and left work. When he arrived, it was clear that we either took R. to the ER right then, or wait and take her later. Not taking her didn't seem as though it was going to become an option.
While in the ER, R. did her whole psychotic show for everyone. Personally, I was relieved because other people really needed to see what we were telling them. As a result it felt as though we were suddenly taken much more seriously. This wasn't just slightly difficult behavior that the parents were having difficulty navigating, this was genuine psychosis. I have to say it's nice to be believed and taken seriously. And, when combining this episode with the one from late September, it seemed abundantly clear to everyone that this was directly related to the aftermath of her seizures. It's a pretty yucky way to get answers, but answers is really what we have been needing for three and a half years, so I'll take it.
They decided to keep her for observation, though that wasn't their first decision. The decision to admit came after I kept repeatedly asking what we were to do if her behavior continued. Were we to drive her back again? Because we certainly weren't going to play wrestle-the-eloper all night. Of course, this also meant that one of us needed to stay with her. The hospital staff suggested that we should leave her, let the hospital staff play chase-the-eloper, and we get some rest. Well, we couldn't do that, because after spending the last three years building up her stability that we wouldn't leave her, the last thing we wanted was to ruin that. J. stayed (because he is a fantastic husband and father and my hero), and I went home to get some sleep. I relieved him the next morning so he could go to work.
All of this is why R. and I found ourselves in the hospital on Halloween. Now, I've been in the hospital with children more than a few times, but never on a holiday and never in a swanky children's unit. The swag! Oh my goodness... it was non-stop. We came home with dolls, games, costume pieces, coloring books, blanket, and crafts. We saw Spiderman. We were visited by a therapy dog. We saw Child Life far more often than we saw the doctors and nurses combined. If I had had a typical child in the hospital missing a fun holiday, it would have been fantastic. R. is not a typical child.
R. is a child who has been very hurt by her past experiences which have also caused her to develop coping mechanisms which served her well in the past but are not healthy in her present. I'm afraid the hospital setting with all the very nice and concerned people took her right back to her poor coping habits. She eats up the poor, poor child, let me give you a gift-thing like nobody's business. Her learned helplessness came out in all sorts of ways. She became the poor, poor child who needs help. I actually pondered briefly putting a sign outside our door which announced, "You are being played". But I didn't . It wouldn't have worked and I didn't have it in me to repeatedly explain. I did a lot of smiling and nodding and grinding my teeth instead. I'll tell you, it was a shock when I told her she would have to get into the van all by herself as we left for home. Learned helplessness is actually very easily contracted, but is a little difficult to unlearn. It can be a painful process. It will be a fun few days ahead of us.
But after all that, I think we have made significant progress. Everyone seems to agree that this behavior is a direct result of seizures. We are again titrating up her seizure medicine. We also discovered that a seizure rescue medicine seems to stop the behavior. At least it has twice now. We came home with a filled prescription of it. And, most amazingly of all, we now have a pediatric psychiatrist who is not only willing to see R., but has said to make an appointment in four weeks. Most pediatric psychiatrists around here are running 9 to 12 months out for new patients. They are nearly impossible to get into. The nurse and I agreed that sometimes you just have to go the hospital route to get into one. (We need a peds psych because that is who will prescribe and monitor this new medicine. I don't quite get the division of abilities between specialists to prescribe certain drugs, but there it is.)
In the meantime, back at home, it was Halloween. A. and P. did a fantastic job of helping to make sure everyone had a costume (if they were undecided) or had all their pieces (if they had an idea). I had purposefully taken the day off of school to do just that, but I wasn't around. J., in a vaguely groggy state, was able to get home in time to take them out trick-or-treating. So while R. and I didn't get home until 6:40 this evening, life went on and everyone had a good time.
Also, since we had quite the snow storm today leaving several inches on the ground, there were not a whole lot of people out this evening. At a lot of the houses, the children were told to take several or a handful or a large handful of candy. They were happy to oblige. Here is the haul, minus what they had already eaten. (Those are exceedingly large bowls.)
Two nights ago, Monday night, R. surprised us with a big seizure. There was nothing that would indicate one was coming. J. moved her into our room, hoping we would sleep. We did, fitfully, because she proceeded to have three more big seizures during the night. Tuesday morning she was a little dazed as is to be expected, and then had one more big seizure. I thought perhaps that was it, and had her sitting in a chair under a blanket to begin to recover. Of course, the five minutes I leave the room to go to the bathroom, R. starts in on her psychotic behavior, trying to throw anything within reach. I was called by children who were doing a great job of removing any potential projectiles.
It looked as though life was heading south pretty quickly so I called J., admitted I had no margin, and then burst into sobs when he asked if he should come home. (I am still concerned about my mom, and there is only so much stress and worry a person can manage, it seems.) J. correctly interpreted his sobbing wife as needing him, so he packed up and left work. When he arrived, it was clear that we either took R. to the ER right then, or wait and take her later. Not taking her didn't seem as though it was going to become an option.
While in the ER, R. did her whole psychotic show for everyone. Personally, I was relieved because other people really needed to see what we were telling them. As a result it felt as though we were suddenly taken much more seriously. This wasn't just slightly difficult behavior that the parents were having difficulty navigating, this was genuine psychosis. I have to say it's nice to be believed and taken seriously. And, when combining this episode with the one from late September, it seemed abundantly clear to everyone that this was directly related to the aftermath of her seizures. It's a pretty yucky way to get answers, but answers is really what we have been needing for three and a half years, so I'll take it.
They decided to keep her for observation, though that wasn't their first decision. The decision to admit came after I kept repeatedly asking what we were to do if her behavior continued. Were we to drive her back again? Because we certainly weren't going to play wrestle-the-eloper all night. Of course, this also meant that one of us needed to stay with her. The hospital staff suggested that we should leave her, let the hospital staff play chase-the-eloper, and we get some rest. Well, we couldn't do that, because after spending the last three years building up her stability that we wouldn't leave her, the last thing we wanted was to ruin that. J. stayed (because he is a fantastic husband and father and my hero), and I went home to get some sleep. I relieved him the next morning so he could go to work.
All of this is why R. and I found ourselves in the hospital on Halloween. Now, I've been in the hospital with children more than a few times, but never on a holiday and never in a swanky children's unit. The swag! Oh my goodness... it was non-stop. We came home with dolls, games, costume pieces, coloring books, blanket, and crafts. We saw Spiderman. We were visited by a therapy dog. We saw Child Life far more often than we saw the doctors and nurses combined. If I had had a typical child in the hospital missing a fun holiday, it would have been fantastic. R. is not a typical child.
R. is a child who has been very hurt by her past experiences which have also caused her to develop coping mechanisms which served her well in the past but are not healthy in her present. I'm afraid the hospital setting with all the very nice and concerned people took her right back to her poor coping habits. She eats up the poor, poor child, let me give you a gift-thing like nobody's business. Her learned helplessness came out in all sorts of ways. She became the poor, poor child who needs help. I actually pondered briefly putting a sign outside our door which announced, "You are being played". But I didn't . It wouldn't have worked and I didn't have it in me to repeatedly explain. I did a lot of smiling and nodding and grinding my teeth instead. I'll tell you, it was a shock when I told her she would have to get into the van all by herself as we left for home. Learned helplessness is actually very easily contracted, but is a little difficult to unlearn. It can be a painful process. It will be a fun few days ahead of us.
But after all that, I think we have made significant progress. Everyone seems to agree that this behavior is a direct result of seizures. We are again titrating up her seizure medicine. We also discovered that a seizure rescue medicine seems to stop the behavior. At least it has twice now. We came home with a filled prescription of it. And, most amazingly of all, we now have a pediatric psychiatrist who is not only willing to see R., but has said to make an appointment in four weeks. Most pediatric psychiatrists around here are running 9 to 12 months out for new patients. They are nearly impossible to get into. The nurse and I agreed that sometimes you just have to go the hospital route to get into one. (We need a peds psych because that is who will prescribe and monitor this new medicine. I don't quite get the division of abilities between specialists to prescribe certain drugs, but there it is.)
In the meantime, back at home, it was Halloween. A. and P. did a fantastic job of helping to make sure everyone had a costume (if they were undecided) or had all their pieces (if they had an idea). I had purposefully taken the day off of school to do just that, but I wasn't around. J., in a vaguely groggy state, was able to get home in time to take them out trick-or-treating. So while R. and I didn't get home until 6:40 this evening, life went on and everyone had a good time.
L. was Martin the Warrior from the Redwall series.
Y. was Anne of Green Gables.
G. was a Cubs player.
K. was Eeyore.
H. was a life guard, thanks to A. Notice the whistle and goggles around her neck, the life guard fanny pack, and the life guard hat.
Also, since we had quite the snow storm today leaving several inches on the ground, there were not a whole lot of people out this evening. At a lot of the houses, the children were told to take several or a handful or a large handful of candy. They were happy to oblige. Here is the haul, minus what they had already eaten. (Those are exceedingly large bowls.)
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