Start Moving Along!!
Posted Oct 12, 2010 10:10am
It’s been more than a month now since we took the plunge into the surgical pool, and we’ve all come up on the other side, a little breathless, more than a little exhausted, but intact! The kids were watching a television show called, “I Shouldn’t Be Alive” last night, and I could not help but make small comparisons to our own situation here. No, we weren’t capsized in the Amazon by a rogue hippo, or attacked by alligators, or flesh eating ants, but it has definitely been a trip of twists and turns, ups and downs, and situations we did not foresee, and yet have to adapt to. But today was the hallmark day when we visited the hospital to get our gold star that says, “YOU MADE IT!”.
Sunday night, I planned to get up early, fold the laundry, take a shower, pack all my eBay stuff, get Phil up, give him a shower and get in the van by 8:30 and head out. Ha! Like THAT happened! No, it was more like I got up, let the dog out (who is almost completely potty trained now – YEA!), stumbled to the kitchen, made the coffee, and had two cigarettes while staring through bleary eyes at my computer screen which told me I had three more packages to pack and ship, Kohls is having yet another sale, and Office Max has coupons to print, giving me three cents off of an item that is overpriced by about 600%. Just a little too much on the plate, and Phil has reached a point where he is not always comfortable all the way through the night, and needs to be turned off his butt from time to time, so sleep commodities are at an all time high here, and we are on the wrong side of that investment!
But arise we did, got Phil dressed, gave him a quick sponge-over in true Sailors Shower fashion, smoothed down his hair that desperately needs to be cut, and off we went.
First stop at Children’s was the Surgery clinic, where we replaced his G-tube Mic-Key button. This was interesting, and Phil was great! He was afraid it would hurt, but managed to sit through it with nary a whimper! It did not hurt, after all, and he was happy to keep the old was as a souvenir. Gross – but he’s a 12-year-old boy…what did we expect?
Next stop, Orthopedics, where they took x-rays. Phil was prepared for having to lay down on the table, which would have been insanely uncomfortable, but we were pleasantly surprised when they told us they only needed him to sit up on a bench to take it. One transfer, two lead aprons and a breath hold later, they had what they needed, and we were off to consult with Dr. Tassone. When we got to the examining room, they wanted to know height and weight. Height was a little tricky, and weight has been reduced to anyone’s best guess. And even with primitive measuring techniques, Phil has officially grown 4+ inches. The nurse then popped the x-rays up on the computer screen, and told us the Dr. would be in shortly. Now, I know you are not supposed to toy with the computers in the examining rooms, but I could not resist mousing around all of his x-rays, the comparatives, the before and afters…resizing, zooming in…WOW! You just have to check out the two pics they sent us home with. And, uh…don’t tell Phil I posted them…he wants to take them to school first! He’s pretty impressed – and rightly so – with his fine array of no less than 37 screws! (Could be more – it’s an X-ray, after all…).
Dr. Tassone came in and gave Phil the once over, took in all our info regarding his healing, and then answered the list of questions we had for him, which were many. You don’t think of little things, like, will his back still “crack”? (I REALLY wanted to hear that it’s okay, because it sounded very chiropractic when we transferred him a few times – scary if it’s not supposed to do that!). What is his range of motion? No pelvic flexion or extension, or we could loosen or even break the rods at the lower back. We all agreed that a re-do was not something we wanted to do. We pointed out the little string that was hanging out the top of his scar, and he ruined my story about it being a zipper and plucked it out. He was given the go-ahead to head back into academia, and truthfully, I can’t wait! Phil has been cooped up long enough, and after today’s appointment with the new wheelchair company, I am thinking Wednesday would be a great time for him to return to his friends and teachers and rejoin the “real” world! He’s mastered enough video games for a lifetime – (my opinion…I’m sure we’ve not seen the last car theft on Grand Theft Auto. I’ll just be glad to not be humming the theme music to the Sims all freakin’ day either…).
Scripts were re-written for Occupational and Physical Therapy, and I have hooked up with a place in Sheboygan which can actually handle acute medical therapy, and therapists who do not see the prescription as a hot potato. I suspect I will hear from them today – (they actually return their calls!! Can you believe it??) – and we can set that up for Phil. Eating and playing have been challenges, but hats off to Phil for really being imaginative in his coping and adaptation to that! He still cannot eat completely independently, but really gives it the old college try before he asks for assistance. We have a ways to go before we will all be comfortable with transferring and toileting and dressing, but you’d be surprised how creative you can get. I’m looking forward to learning anything I can from people who deal with this on a daily basis.
Life here has changed. Oh, much of it is still the same. My daily to-do list is still more than can fit on a business sized envelope of household chores and appointments and phone calls and letters and e-mails and trying to figure out how to make the $400 in the checking account magically pay $2000 worth of bills…but there is a new dynamic to everything. Priorities have changed. Staples have changed; we’ve grown our list of critical items beyond things like straws and urinals to feeding supplies, a plethora of pillows, draw sheets, blankets, towels and washcloths, suction and cough-assist parts, under pads and snap-side pants. Bedtime is not a singular time anymore – it’s an hour or better of set up and transfer and fluff ‘n’ stuff, and repositioning to the Goldilocks standard of “Just Right” – something that needs to be taken into consideration when you are already dragging your tail at 8:00 p.m. Wake up, too. (We, in fact, hope we can get him to school on the bus – this will be an early reveille!) Little things like getting into the basement to do laundry or pack up an eBay item are weighed out against who can be upstairs with Phil, or how quickly you can accomplish it and make sure you can hear him if he calls. (I miss my iPod and my tunes – no more tuning out ) Getting to the store for odds and ends is only happening with the assist of the teenage drivers – Rachel and Si – even at the cost of my insurance doubling for the privilege.
More than that, I have changed. Just prior to Phil’s surgery, a friend on Facebook posted the following quote from Elenore Roosevelt:
“Every time you meet a situation, though you think at the moment is an impossibility,
and you go through the tortures of the damned;
once you have met it and lived through it,
you find that forever after you are freer than you were before.”
I have not researched what trial produced those words for her, but this resonates with me. Especially the phrase “tortures of the damned”. I can think of no more descriptive words to convey the feeling you have when you are about the put your baby up on the altar of modern medicine. The thoughts your mind treats you to about “what if” and whether or not you are making the right decision. The depth and complexity of the issue overwhelm you, spiritually, emotionally, mentally and physically – BEFORE you have to go into battle! Argh!
But that was just more than a month ago. We battled. And this battle we WON!! Screw Duchenne – it may not be the war – but it was one kickass battle and WE WON!!! And today I feel covered in mud, scraped up, bruised and tired, I’m hungry and exhausted, depleted of energy, and done. But I also realized in the quiet – in the lack of the voices of fear… the realization that we WON! And I look up at Phil, and I smile…we won, buddy. We totally won this one. And I realize the truth of the final line of that quote. Forever after, we will be freer than we were before.
Sunday night, I planned to get up early, fold the laundry, take a shower, pack all my eBay stuff, get Phil up, give him a shower and get in the van by 8:30 and head out. Ha! Like THAT happened! No, it was more like I got up, let the dog out (who is almost completely potty trained now – YEA!), stumbled to the kitchen, made the coffee, and had two cigarettes while staring through bleary eyes at my computer screen which told me I had three more packages to pack and ship, Kohls is having yet another sale, and Office Max has coupons to print, giving me three cents off of an item that is overpriced by about 600%. Just a little too much on the plate, and Phil has reached a point where he is not always comfortable all the way through the night, and needs to be turned off his butt from time to time, so sleep commodities are at an all time high here, and we are on the wrong side of that investment!
But arise we did, got Phil dressed, gave him a quick sponge-over in true Sailors Shower fashion, smoothed down his hair that desperately needs to be cut, and off we went.
First stop at Children’s was the Surgery clinic, where we replaced his G-tube Mic-Key button. This was interesting, and Phil was great! He was afraid it would hurt, but managed to sit through it with nary a whimper! It did not hurt, after all, and he was happy to keep the old was as a souvenir. Gross – but he’s a 12-year-old boy…what did we expect?
Next stop, Orthopedics, where they took x-rays. Phil was prepared for having to lay down on the table, which would have been insanely uncomfortable, but we were pleasantly surprised when they told us they only needed him to sit up on a bench to take it. One transfer, two lead aprons and a breath hold later, they had what they needed, and we were off to consult with Dr. Tassone. When we got to the examining room, they wanted to know height and weight. Height was a little tricky, and weight has been reduced to anyone’s best guess. And even with primitive measuring techniques, Phil has officially grown 4+ inches. The nurse then popped the x-rays up on the computer screen, and told us the Dr. would be in shortly. Now, I know you are not supposed to toy with the computers in the examining rooms, but I could not resist mousing around all of his x-rays, the comparatives, the before and afters…resizing, zooming in…WOW! You just have to check out the two pics they sent us home with. And, uh…don’t tell Phil I posted them…he wants to take them to school first! He’s pretty impressed – and rightly so – with his fine array of no less than 37 screws! (Could be more – it’s an X-ray, after all…).
Dr. Tassone came in and gave Phil the once over, took in all our info regarding his healing, and then answered the list of questions we had for him, which were many. You don’t think of little things, like, will his back still “crack”? (I REALLY wanted to hear that it’s okay, because it sounded very chiropractic when we transferred him a few times – scary if it’s not supposed to do that!). What is his range of motion? No pelvic flexion or extension, or we could loosen or even break the rods at the lower back. We all agreed that a re-do was not something we wanted to do. We pointed out the little string that was hanging out the top of his scar, and he ruined my story about it being a zipper and plucked it out. He was given the go-ahead to head back into academia, and truthfully, I can’t wait! Phil has been cooped up long enough, and after today’s appointment with the new wheelchair company, I am thinking Wednesday would be a great time for him to return to his friends and teachers and rejoin the “real” world! He’s mastered enough video games for a lifetime – (my opinion…I’m sure we’ve not seen the last car theft on Grand Theft Auto. I’ll just be glad to not be humming the theme music to the Sims all freakin’ day either…).
Scripts were re-written for Occupational and Physical Therapy, and I have hooked up with a place in Sheboygan which can actually handle acute medical therapy, and therapists who do not see the prescription as a hot potato. I suspect I will hear from them today – (they actually return their calls!! Can you believe it??) – and we can set that up for Phil. Eating and playing have been challenges, but hats off to Phil for really being imaginative in his coping and adaptation to that! He still cannot eat completely independently, but really gives it the old college try before he asks for assistance. We have a ways to go before we will all be comfortable with transferring and toileting and dressing, but you’d be surprised how creative you can get. I’m looking forward to learning anything I can from people who deal with this on a daily basis.
Life here has changed. Oh, much of it is still the same. My daily to-do list is still more than can fit on a business sized envelope of household chores and appointments and phone calls and letters and e-mails and trying to figure out how to make the $400 in the checking account magically pay $2000 worth of bills…but there is a new dynamic to everything. Priorities have changed. Staples have changed; we’ve grown our list of critical items beyond things like straws and urinals to feeding supplies, a plethora of pillows, draw sheets, blankets, towels and washcloths, suction and cough-assist parts, under pads and snap-side pants. Bedtime is not a singular time anymore – it’s an hour or better of set up and transfer and fluff ‘n’ stuff, and repositioning to the Goldilocks standard of “Just Right” – something that needs to be taken into consideration when you are already dragging your tail at 8:00 p.m. Wake up, too. (We, in fact, hope we can get him to school on the bus – this will be an early reveille!) Little things like getting into the basement to do laundry or pack up an eBay item are weighed out against who can be upstairs with Phil, or how quickly you can accomplish it and make sure you can hear him if he calls. (I miss my iPod and my tunes – no more tuning out ) Getting to the store for odds and ends is only happening with the assist of the teenage drivers – Rachel and Si – even at the cost of my insurance doubling for the privilege.
More than that, I have changed. Just prior to Phil’s surgery, a friend on Facebook posted the following quote from Elenore Roosevelt:
“Every time you meet a situation, though you think at the moment is an impossibility,
and you go through the tortures of the damned;
once you have met it and lived through it,
you find that forever after you are freer than you were before.”
I have not researched what trial produced those words for her, but this resonates with me. Especially the phrase “tortures of the damned”. I can think of no more descriptive words to convey the feeling you have when you are about the put your baby up on the altar of modern medicine. The thoughts your mind treats you to about “what if” and whether or not you are making the right decision. The depth and complexity of the issue overwhelm you, spiritually, emotionally, mentally and physically – BEFORE you have to go into battle! Argh!
But that was just more than a month ago. We battled. And this battle we WON!! Screw Duchenne – it may not be the war – but it was one kickass battle and WE WON!!! And today I feel covered in mud, scraped up, bruised and tired, I’m hungry and exhausted, depleted of energy, and done. But I also realized in the quiet – in the lack of the voices of fear… the realization that we WON! And I look up at Phil, and I smile…we won, buddy. We totally won this one. And I realize the truth of the final line of that quote. Forever after, we will be freer than we were before.
No comments:
Post a Comment