I find myself avoiding these updates when I don't have anything good to say.
This is one of those times.
He's just as bad as it ever was at its worst. He can't manage the walker. He asked for help getting into bed.
On the other hand, he's adapted so quickly to life in a wheelchair - you should see how he launches himself out of that thing toward whatever he's after. He's been playing hoops in the back yard, and he jumps out of the chair to shoot and then tumbles down onto the grass, which has gone so long without mowing that we call it "the meadow". He's not fragile, he's not afraid to crash and burn when the momentum of forward motion stops keeping him upright. He's actually using some of his martial arts training to fall well, just tonight I complimented him on the judo roll he enacted when he fell from being on all fours.
Now see this? I avoid writing when things suck and I'm down, but once I start writing I feel much better, and naturally start thinking more positively. You tricky blog, you.
So, because the gods are cruel and clever, I got a call at work to ask if we needed the wheelchair delivered today. Naturally, the one I picked up on Thursday only rents on a monthly basis. Naturally, he hated the new one right off the bat and we had to go through that whole damned scene again. It's much lighter that either of the other two, which makes my poor old lady back very happy. I still say let's not get too comfortable in the wheelchair, we need to stay motivated to get OUT.
I was encouraged by the speed with whihc the wheelchair came through once it was requested by PT and approved by our pediatrician. I called the PT scheduling desk to see if that approval had been similarly efficient. No one called me back. Yet.
I also sent out a barrage of emails after embarking on a covert email address seeking mission. I'm starting with California, and am cautious to tread lightly so that I don't waste the opportunity of anyone's attention without all the relevant data. The head of the Ataxia clinic at UCLA actually wrote me back a one line reply: "let me know what blood and urine testing was done." Yes I will, good Doctor! I ordered a personal copy of his medical records early last week, so hopefully I'll be able to let her know about that pretty quickly.
So, onward. What I need is a plan. If he is not better by________, we'll do_________.
Who can fill in those blanks?
Showing posts with label again with the tests. Show all posts
Showing posts with label again with the tests. Show all posts
Monday, May 24, 2010
Friday, May 7, 2010
These all go to Eleven.
How could I not quote the movie that shares a name with the procedure my brave boy had done today? I might have to watch it tonight to pay homage, I'm in just the right mood for awkward laughter.
We're home, it was a long day. We checked in at 10 (after being late getting Clara to school because she informed me on our way out the door about what she was supposed to have done for her mother's day project). The joint was packed. Such sick kids in there, it just tears your heart apart. That feeling fades a little after three hours of waiting for our turn while listening to each one of those poor sick babies cry themselves to sleep and then wake from anesthesia and scream their heads off for the hour they were supposed to lie flat. I kept asking, but no one would agree to sedate me.
He was a trooper, as per the new usual. A child life specialist came and talked to him right when we got there, she let him use a real syringe and tube to start an IV on a cabbage patch doll, and then showed him a photo book of another kid getting a spinal tap. He got his IV, and we chilled out watching game shows and steadfastly not eating or drinking.
When it was Jimmy's turn, they rolled his bed into the procedure room where we met the anesthesiologist, the nurse practitioner who would perform the procedure, and a nurse. We both had the chance to ask questions and see everything, the anesthesiologist asked Jimmy what his allergy was (he wears a red admit bracelet because he's allergic to penicillin), and he answered: "grass and cats." LOL.
He had three injections into his IV, the first two made his eyes all screwy and he was just about to start yakking when the third went in, and about 2 seconds later his eyelids slammed shut and he was out cold. I gave him a kiss on the forehead, told them to take good care of him, and left the room. Then I had what I consider a perfectly natural reaction to the current situation - I started bawling. You'd think that in the frigging oncology/hemo clinic, they'd be desensitized to crying mothers, but they all jumped into action. It was weird. A super annoying woman came in to tell me not to crumble in front of my son, told me her son's big story, and told me a bunch of condescending shit I already know and was not interested in hearing. I just stared at her clumpy make up and responded sarcastically inside my head. By the time she left, my boy was wheeled back in all curled up in the fetal position under a blanket. He was totally cashed out, I just got to stare at him and touch him and breathe again. I feel much better when we're together!
He started to wake up soon after, and was cute and weird and kept asking me the same questions over and over. I gave him a granola bar and some water, and he had to lie flat for an hour. When that time was up, the nurse came and took out his IV, and she thought he felt warm so she took his temperature and it was 100.4, so they made us stay a little longer. I went for sandwiches, the doctor was paged, they monitored him for an hour and it went down to 99, so they sent us home. He on the couch, a little sore. I just gave him an advil and set him up with a heating pad, a gatorade, and the remote control. He's been promised pizza when he gets hungry, and we've got Rocky to watch tonight. Another day, another drama. I talked to the neurologist a little while ago, he wont get some of these results back for a week but he'll call if anything comes up before then. He reassured me that nothing he might find in these tests would warrant any urgent intervention, we continue to coast in this holding pattern, just waiting for things to improve. I'm determined to get him in to Physical Therapy next week, I'll keep y'all posted!
We're home, it was a long day. We checked in at 10 (after being late getting Clara to school because she informed me on our way out the door about what she was supposed to have done for her mother's day project). The joint was packed. Such sick kids in there, it just tears your heart apart. That feeling fades a little after three hours of waiting for our turn while listening to each one of those poor sick babies cry themselves to sleep and then wake from anesthesia and scream their heads off for the hour they were supposed to lie flat. I kept asking, but no one would agree to sedate me.
He was a trooper, as per the new usual. A child life specialist came and talked to him right when we got there, she let him use a real syringe and tube to start an IV on a cabbage patch doll, and then showed him a photo book of another kid getting a spinal tap. He got his IV, and we chilled out watching game shows and steadfastly not eating or drinking.
When it was Jimmy's turn, they rolled his bed into the procedure room where we met the anesthesiologist, the nurse practitioner who would perform the procedure, and a nurse. We both had the chance to ask questions and see everything, the anesthesiologist asked Jimmy what his allergy was (he wears a red admit bracelet because he's allergic to penicillin), and he answered: "grass and cats." LOL.
He had three injections into his IV, the first two made his eyes all screwy and he was just about to start yakking when the third went in, and about 2 seconds later his eyelids slammed shut and he was out cold. I gave him a kiss on the forehead, told them to take good care of him, and left the room. Then I had what I consider a perfectly natural reaction to the current situation - I started bawling. You'd think that in the frigging oncology/hemo clinic, they'd be desensitized to crying mothers, but they all jumped into action. It was weird. A super annoying woman came in to tell me not to crumble in front of my son, told me her son's big story, and told me a bunch of condescending shit I already know and was not interested in hearing. I just stared at her clumpy make up and responded sarcastically inside my head. By the time she left, my boy was wheeled back in all curled up in the fetal position under a blanket. He was totally cashed out, I just got to stare at him and touch him and breathe again. I feel much better when we're together!
He started to wake up soon after, and was cute and weird and kept asking me the same questions over and over. I gave him a granola bar and some water, and he had to lie flat for an hour. When that time was up, the nurse came and took out his IV, and she thought he felt warm so she took his temperature and it was 100.4, so they made us stay a little longer. I went for sandwiches, the doctor was paged, they monitored him for an hour and it went down to 99, so they sent us home. He on the couch, a little sore. I just gave him an advil and set him up with a heating pad, a gatorade, and the remote control. He's been promised pizza when he gets hungry, and we've got Rocky to watch tonight. Another day, another drama. I talked to the neurologist a little while ago, he wont get some of these results back for a week but he'll call if anything comes up before then. He reassured me that nothing he might find in these tests would warrant any urgent intervention, we continue to coast in this holding pattern, just waiting for things to improve. I'm determined to get him in to Physical Therapy next week, I'll keep y'all posted!
Thursday, May 6
Jimmy had a good day today, he was happy to go to school and enjoyed his acupuncture afterwards. One thing that troubles me is that he says he can not visualize himself without "the wobble", he only sees himself falling down. Is it just too abstract a concept, or is he seeing his future? I'm scared to death of all that we do not know, and I'm on the verge of panic about tomorrow's lumbar puncture. I know he is in the best hands, and I'm very thankful that his doctor wrote the order in such a way that the sedation and hemo/onc clinic was approved by our insurance. Lucky, lucky. I attended an event tonight where I won so many raffle drawings that the other entrants were conjoined in their stink eye. That's a good sign, right? I did not accept the only prize I really wanted; that's good karma, right? I'll offer anything, I'll even give back my yoga mat and exercise videos and false eyelashes and I spy wii game and whatever else is in that swag bag, it's all absurdly unimportant. Just make him okay, okay?
We check in at 10, I'll get to stay with him until he's asleep,we should be home well before dinner time. If you're inclined to pray or hope or wish or dream, don't hold back!!!
We check in at 10, I'll get to stay with him until he's asleep,we should be home well before dinner time. If you're inclined to pray or hope or wish or dream, don't hold back!!!
Wednesday, May 5, 2010
back to school
Well, after the initial drama of this morning's drop off, Jimmy had a great day at school! I even got to go in to work for a couple of hours, although it was almost more frustrating to be there with so many projects half done and others yet to be started. It's all relative, though. Today it was just good to be there and see everyone. It's hard to answer "how is he?" or "how are you?" with any sense of depth or reality, but being able to say that he was at school felt a whole lot more normal than anything else has in these tumultuous two weeks.
So as I mentioned, Jimmy had asked me to stay at school with him, and I was willing to do so, but at one point he was goofing around with his friend while a very cool artist was addressing his class, and after the third time I told him to knock it off, he informed that I could go ahead and leave. I was happy to oblige, although it was very strange to leave him in someone else's hands, even the wonderful hands at his school. I wish he had a better wheelchair, this one is a clunker and he really needs a pediatric model. No word from the pediatrician today on progress toward getting one.
After school, we went back to the pool for a dip, this time with a kickboard. Then we stopped at the Farmer's Market and sampled everything until it got so crowded on the sidewalks to maneuver around. At 3:00 when I had yet to hear from anyone regarding whether or not the spinal would be tomorrow, I called the neurologist's office again. Once again I left a message with the assistant's voicemail, but this time I directed the message to her rather than to the doctor. About an hour later, I was rewarded with an actual human phone call! Yay! She was surprised that I had not yet heard from the clinic about scheduling, because we were on for tomorrow. Just as we got to the Farmer's Market, a woman from the pediatric oncology unit called. She explained what the doctor had already told me, that he wanted Jimmy's spinal done there because they are experts with the procedure, and she added that they have the best anesthesiologists. Unfortunately, no one had been able to authorize the procedure for tomorrow - not due to an insurance problem, but because their administrative assistant had a family emergency. So we scheduled it for Friday, which is better because Jimmy has a half day tomorrow and gets to spend most of it in his Lego Engineering department, which he has been loathe to miss thus far. I was able to change his Friday acupuncture appointment to tomorrow at 1:30, so it all works out nicely.
Anyone notice how I talk too much to avoid confronting the fact of a lumbar puncture to extract my baby booy's spinal chord fluid? No? Good.
He'll be sedated, no food after midnight tomorrow and we get there at 9:00 for anesthesia at 11. I can stay with him until he falls asleep, then they will (lalalalallalalalalaala I can't heeeaaaar you) and then bring him out to me when he's all done. He'll be right as rain - or at least back to his usual weird self - within a few hours.
And then?
Let's pine for a miraculous, swift recovery, shall we?
So as I mentioned, Jimmy had asked me to stay at school with him, and I was willing to do so, but at one point he was goofing around with his friend while a very cool artist was addressing his class, and after the third time I told him to knock it off, he informed that I could go ahead and leave. I was happy to oblige, although it was very strange to leave him in someone else's hands, even the wonderful hands at his school. I wish he had a better wheelchair, this one is a clunker and he really needs a pediatric model. No word from the pediatrician today on progress toward getting one.
After school, we went back to the pool for a dip, this time with a kickboard. Then we stopped at the Farmer's Market and sampled everything until it got so crowded on the sidewalks to maneuver around. At 3:00 when I had yet to hear from anyone regarding whether or not the spinal would be tomorrow, I called the neurologist's office again. Once again I left a message with the assistant's voicemail, but this time I directed the message to her rather than to the doctor. About an hour later, I was rewarded with an actual human phone call! Yay! She was surprised that I had not yet heard from the clinic about scheduling, because we were on for tomorrow. Just as we got to the Farmer's Market, a woman from the pediatric oncology unit called. She explained what the doctor had already told me, that he wanted Jimmy's spinal done there because they are experts with the procedure, and she added that they have the best anesthesiologists. Unfortunately, no one had been able to authorize the procedure for tomorrow - not due to an insurance problem, but because their administrative assistant had a family emergency. So we scheduled it for Friday, which is better because Jimmy has a half day tomorrow and gets to spend most of it in his Lego Engineering department, which he has been loathe to miss thus far. I was able to change his Friday acupuncture appointment to tomorrow at 1:30, so it all works out nicely.
Anyone notice how I talk too much to avoid confronting the fact of a lumbar puncture to extract my baby booy's spinal chord fluid? No? Good.
He'll be sedated, no food after midnight tomorrow and we get there at 9:00 for anesthesia at 11. I can stay with him until he falls asleep, then they will (lalalalallalalalalaala I can't heeeaaaar you) and then bring him out to me when he's all done. He'll be right as rain - or at least back to his usual weird self - within a few hours.
And then?
Let's pine for a miraculous, swift recovery, shall we?
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