Lyrics for Crooked Legs
(by The Acorn)
Tip courtesy of big sister Blake...
http://www.youtube.com/watch?v=t_-LLeV5AZc (music video on U-Tube)
I looked up and picked out a map in the sky
no need for the nude of the moon as I'm guided by fireflies
and they whisper prayers to my feet
as I tiptoe through gardens minding the slumber of parakeets
and lovers on the way
I won't feel the pull of the coming day
or the compromise of sleep
'cause I've got a fire on the soles of my feet
I'm going as far as these crooked legs take me
not stopping for water or dew covered daisies
not waiting for ribbons or medals to praise me
now washing the blood that has covered and stained me
Oh to be fooled by the wool that has covered me
oh to be led by the light of a melody
I'm making my way while the sun cannot stain me
I'm watching the road with two young eyes to guide me
not looking behind to ensure that the home fires are shrinking
the fireflies fade as the city lights find me
Oh to be fooled by the wool that has covered me
oh to be led by the light of a melody
I'm going as far as these crooked legs take me
I'm watching the road with two young eyes to guide me
I'm making my way while the sun cannot stain me
I'm going as far as these crooked legs take me
************************
We are all doing well. Just got out of school and getting into some summer camps. Fiona is currently attending "Cooking Around the World" at the Children's Museum in Tacoma, and Maddi will be taking "Chinese Language and Culture" - her request. Just trying to keep up with the therapy schedule, finish the renovation and still have some fun. It's all going well, and we're looking forward to connecting with many of your this summer!
Thursday, June 25, 2009
Monday, April 13, 2009
Dr. Park on NBC!!!
Imagine our surprise when Patty, our dear next door neighbor called tonight and said something like, "Did you just see that Dr. Park was on the news are you kidding me the national news didja see it maybe you can see it on the Internet I can't believe it DR. PARK on the NEWS tonight Yeah NBC with Brian Williams GO AND WATCH IT! Oh, I'd better get off the phone...."
So here is the clip!
So here is the clip!
Friday, April 10, 2009
Discharge Day - April 08
Hello, Doug here.....
Fiona on the platform swing
This post is a being written out of order (this is actually an update from April 08th, the day Fiona was discharged) but things have been a bit crazy the last few days and I figured you would rather read this news than not.
First of all, I took the red-eye on Tuesday night from Seatac to Detroit. OK, THAT was nuts! I sat next to a talker. You know the kind - a nice guy with a quasi-interesting life, a persistent approach and a little slow on the 'hint' uptake. Yawning, closing my eyes, all the usual things didn't seem to shut this guy up so I listened - a LOT! I had been upgraded to first class so luckily had access to premium and low-cost libation so, even though I didn't sleep, I DID enjoy an occasional scotch! (And you know me and scotch..)
I arrived at St. Louis Children's Hospital with camera in tow, just in time for Fi's final PT with Beth. I was amazed with the change in Fiona's tone (old spaghetti legs I now call her) - from having stiff, unyielding hockey sticks for legs to having unnatural flexibility. I quickly realized that Fi will need a LOT of PT in the near future to help her build up tone and strength in those muscles that she has never had the chance to use. Very exciting and yet, very scary! Her ankles and knees bend in ways I'm not sure they are designed to! We were encouraged to take a trip to the St. Louis zoo before the flight left - you may remember from a previous post that our zoo day had been rained out before surgery - and even though Fi was still quite medicated, she was VERY excited about seeing the animals. We had an uneventful check-out / discharge and then headed to the zoo.
Fiona on the platform swing "I'm a tiger!"
"Mum, gimme the puzzle!"
"Come on, Fwoggie, this won't hurt a bit!"
Shooting hoops - St. Louis style
Now this is SOME zoo!! I had heard great things about the place, most of which were followed by "...and it's FREE!" so I guess I had low expectations. How good can a free zoo be, right?? Well let me tell you, the St. Louis Zoo is AMAZING! Great accessibility for wheelchairs, an extensive collection of animals, great habitat for the beasts and expansive! We could have easily spent the day. If you ever find yourself in St. Louis, make sure you check out the zoo! (Did I mention that it's free?)
A soulmate - especially after a red-eye!
Sooo, if therapy on horseback is "Hippotherapy" would therapy on a zebra be "Zippotherapy"?
"Come closah with that fancy Nikon!!! We'll see if it's waterproof!"
In case you don't know me, I have a weekend gig as a Wedding Photographer. Why am I telling you this?? Well, we had one more stop to make in St. Louis en route to the airport. Denis Reggie, one of the leading Wedding Photographers, was speaking in St. Louis at 6:00pm. Our flight was leaving at 8:05pm. Not likely, right? Well Chris INSISTED that I scoot by the venue and at least touch base with Denis Reggie. (Chris bought me a four-day training session with Denis a few years ago and it's ALWAYS a good idea to keep in touch with folks!) So, plug the address into the trusty GPS and race like a fiend (NOT speeding Phil!) through the streets of St. Louis. I arrived at the hall five minutes before Denis was set to speak and I had the chance to talk with him again. This was cool and if it hadn't been for Chris' insistence, I would have taken the conservative approach and gone to the airport instead.
At the airport, we were in for more fun! As you can imagine, we had a LOT of gear - suitcases, Fiona's walker and stroller and car seat, feeding bag, carry-ons, my camera gear, etc., so when we hit the check-in counter, we were a bit flabbergasted. When we arrived at the gate, the gate agent asked if we wanted to board early to avoid the rush. This is code for, "Can we get you out of the way so you don't cause a traffic jam", but we were glad for the extra time. The gate agent gave the car seat to a flight attendant who strapped it into Fiona's assigned airplane seat. The gate agent then took Fi's walker (a rather expensive orthopedic deal) which we had gate checked and rather than carrying it to the tarmac down the stairs at the end of the jet way, she attempted to send it down a makeshift chute that was obviously too narrow and too steep. Cha-ching! The walker fell fifteen or so feet to the pavement below! Something else to deal with when we hit Seattle!
From the minute we put Fi in her car seat, she complained that "My back is soah." We expected this what with the trip to the zoo, the crazy rushing around and the fact that she had been flat on her back for the past few days so we didn't really pay too much attention to her lament. Come on, Tylenol with Codeine! She complained on and off the entire flight but she did get some sleep. When we arrived in Seattle and had pulled up to the gate, I unbuckled her car seat to find that the flight attendant had attached the airplane seat belt in such a way the belt buckle was positioned just about exactly where Fiona's spinal incision was! It was covered by about 1/4" of padding so we hadn't noticed it before but every time Fi had moved or the plane had jostled her, the seat belt buckle must have dug into her back. YIKES!!!! As soon as I had unbuckled the seat belt, Fi pushed back in her chair and said, "There, that's better!" OK, for all you judging people out there making comments about me as a Father, I'M SORRY!!! It won't happen again!
All in all, the tip went better than I expected. Fi is very resilient (more so that Chris and I) and we look forward to her new life and new found possibilities!
We appreciate all of your support and the feedback we are getting about this blog. We will update as much and as often as we are able but now we are back in the daily grind at home, we don't have quite as much time to be writing....but we'll try! Please stay tuned!
We're Home
Hi all. Just a quick post to let you know we all made it home safely. Fiona is getting remarkably stronger every day and is able to do more and more. For example, yesterday she couldn't stand, even supported, but today I was able to support her while she hung on to a ledge and planted both feet nicely on the floor.
I intend to keep up the blog so that everyone can follow her progress. There are many more pictures and video for me to add. I am just overwhelmed with the clean-up and unpacking process and Maddi really needs some attention from me. Maddi had a rough night with homework and TV and attitude. Once the dust had settled, I told her that I was going to pick her up from school tomorrow WITHOUT Fiona. Just me and her. She looked at me with eyes watering up and asked "why are you going to do that?" I said "Because you're special too" and she burst into tears.
Thank you to everyone who came to the house to provide food, dog walking, transportation and companionship to my mum and Maddi.
I hate to leave you hanging, especially all of our long distance friends and family and those of you who have followed us through this journey without having met us. Thank you again. I'll be back!
p.s. Abductors are the outside hip (the muscle you work when you do leg raises), Adductors are the inside thigh (the one Suzanne Sommers invented the thigh master for). So they both exist. Cleared up. Just had to correct myself.
I intend to keep up the blog so that everyone can follow her progress. There are many more pictures and video for me to add. I am just overwhelmed with the clean-up and unpacking process and Maddi really needs some attention from me. Maddi had a rough night with homework and TV and attitude. Once the dust had settled, I told her that I was going to pick her up from school tomorrow WITHOUT Fiona. Just me and her. She looked at me with eyes watering up and asked "why are you going to do that?" I said "Because you're special too" and she burst into tears.
Thank you to everyone who came to the house to provide food, dog walking, transportation and companionship to my mum and Maddi.
I hate to leave you hanging, especially all of our long distance friends and family and those of you who have followed us through this journey without having met us. Thank you again. I'll be back!
p.s. Abductors are the outside hip (the muscle you work when you do leg raises), Adductors are the inside thigh (the one Suzanne Sommers invented the thigh master for). So they both exist. Cleared up. Just had to correct myself.
Tuesday, April 7, 2009
We've come a long way. Spinal surgery to bowel movements.
One day, I hope Fiona will appreciate having this documentation of the SDR experience. However, I think she will forever hate me for the last post.
Fiona is awake now and was very mad at me for the diaper incident. This is all good, because it's another thing that I can call appropriately seven years old.
She is requiring a lot more attention now that she is getting better and wants up and down, so I will have less time for posts. That's a good thing too. I will continue with the updates after we get home.
I wanted to say hello and thank you to all the people affiliated in some way with Loredana at Telus Corp in Edmonton, Alberta. I love to hear about your enthusiasm for the recovery of a little girl you don't even know. It is heart-warming.
Ever see the movie The Secret? I have always been a bit of a skeptic. Doug claims he can get good parking spots this way. I might just be ready to believe that we have collectively healed a child with a blog!
Fiona is awake now and was very mad at me for the diaper incident. This is all good, because it's another thing that I can call appropriately seven years old.
She is requiring a lot more attention now that she is getting better and wants up and down, so I will have less time for posts. That's a good thing too. I will continue with the updates after we get home.
I wanted to say hello and thank you to all the people affiliated in some way with Loredana at Telus Corp in Edmonton, Alberta. I love to hear about your enthusiasm for the recovery of a little girl you don't even know. It is heart-warming.
Ever see the movie The Secret? I have always been a bit of a skeptic. Doug claims he can get good parking spots this way. I might just be ready to believe that we have collectively healed a child with a blog!
They are ADDUCTORS not ABDUCTORS
O.K. so I realize that at times Fiona's spasticity has held her hostage, however, I still cannot call the offending muscle group "Abductors". I thought about editing all my posts to correct this (the OCD in ME) but I suppose I could spend my time more wisely.
Fiona is quietly sleeping. It was a big day for her. Some odd things have happened in the last few hours. As she slept, for a change, I kept the TV off (I am burnt out from forensic crime dramas...) and decided to review the post-op exercises again, to make sure of any questions I might have for tomorrow. An announcement comes over the hospital-wide intercom. I never listen to those things, never listen to the instructions on the airplane before take-off, husband claims I'm am tuning him out as well. For some reason, this afternoon I heard "van", and decided to listen. Dark blue KIA van to be exact. Hmmmm. I have a Dark Blue rented KIA van. "please report to the information desk on the first floor". Oh boy, what did I do? My first thought was that I have not been allowed to park here day in and day out without some kind of security clearance, so they finally caught up with me. Second thought was that someone broke in. In the end, they were cleaning the fire/sprinkler systems and a bunch of rusty water dumped onto the vehicle. Well, you would have thought they dropped a grand piano on the thing, because I was treated like a volcano ready to blow. They offerred me $10 cash (weird) to get a car wash, and then had to walk me to my car for the viewing. It is quite the mess, but will come off with water no problem I think so I wasn't too concerned. Damage would have been the last thing I needed, but rust is o.k. To be on the safe side, I'm going to go down there with some paper towels and give it an initial wipe. Thankfully, Fiona is fast asleep, so I can get away.
Then I'm returning from that trip, and wait for the elevator on the 2nd floor to return to the 12th. The UP elevator arrives and a lady gets out, but I notice that her hand lingers on the button panel for a minute as I'm entering. I turn around to press my floor, and every floor button has been pushed! Are you kidding me lady? Fun and games at the Children's Hospital...
That's when you know it's time to go. When weird stuff starts happening.
I am glad to go home tomorrow, but I am a bit apprehensive about BEING home with Fiona. As much as it will be good for her to be back in her own bed, and in her own routine, part of Fiona's routine includes spending a great amount of time playing on the floor in her comfortable W-sit. Routine includes complaining about any sort of night-time orthotic or brace and "complaining" actually means kicking and screaming and removing the velcro herself. I am told we will be sent home with knee immobilizers to provide a "gentle" stretch of her hamstrings during the night. I hope she will be able to tolerate this more. I have been madly preparing the house for the post-operative Fiona
Fiona is fast asleep and just yelled out "Oh! I can't get up" and then proceeded to leave a very loud, very not-just-gas sounding noise in her pants, I must go
Fiona is quietly sleeping. It was a big day for her. Some odd things have happened in the last few hours. As she slept, for a change, I kept the TV off (I am burnt out from forensic crime dramas...) and decided to review the post-op exercises again, to make sure of any questions I might have for tomorrow. An announcement comes over the hospital-wide intercom. I never listen to those things, never listen to the instructions on the airplane before take-off, husband claims I'm am tuning him out as well. For some reason, this afternoon I heard "van", and decided to listen. Dark blue KIA van to be exact. Hmmmm. I have a Dark Blue rented KIA van. "please report to the information desk on the first floor". Oh boy, what did I do? My first thought was that I have not been allowed to park here day in and day out without some kind of security clearance, so they finally caught up with me. Second thought was that someone broke in. In the end, they were cleaning the fire/sprinkler systems and a bunch of rusty water dumped onto the vehicle. Well, you would have thought they dropped a grand piano on the thing, because I was treated like a volcano ready to blow. They offerred me $10 cash (weird) to get a car wash, and then had to walk me to my car for the viewing. It is quite the mess, but will come off with water no problem I think so I wasn't too concerned. Damage would have been the last thing I needed, but rust is o.k. To be on the safe side, I'm going to go down there with some paper towels and give it an initial wipe. Thankfully, Fiona is fast asleep, so I can get away.
Then I'm returning from that trip, and wait for the elevator on the 2nd floor to return to the 12th. The UP elevator arrives and a lady gets out, but I notice that her hand lingers on the button panel for a minute as I'm entering. I turn around to press my floor, and every floor button has been pushed! Are you kidding me lady? Fun and games at the Children's Hospital...
That's when you know it's time to go. When weird stuff starts happening.
I am glad to go home tomorrow, but I am a bit apprehensive about BEING home with Fiona. As much as it will be good for her to be back in her own bed, and in her own routine, part of Fiona's routine includes spending a great amount of time playing on the floor in her comfortable W-sit. Routine includes complaining about any sort of night-time orthotic or brace and "complaining" actually means kicking and screaming and removing the velcro herself. I am told we will be sent home with knee immobilizers to provide a "gentle" stretch of her hamstrings during the night. I hope she will be able to tolerate this more. I have been madly preparing the house for the post-operative Fiona
Fiona is fast asleep and just yelled out "Oh! I can't get up" and then proceeded to leave a very loud, very not-just-gas sounding noise in her pants, I must go
More PT
Well, this afternoon's PT was interesting. There was no Tylenol and no Valium, but we arrived armed with a syringe full of Benadryl because the incision has been itchy for her, and she is obsessing over it. That last thing we need is a big scab on her back.
She was still loopy, not as much, but clearly the weakness revealed by the surgery was in it's earliest, purest form. She can sit up nice and straight with a straight head, but likes to llllleeeeeeeeeeeeeaaannnnnnnnnn back, so you can't leave her alone to sit on a bench. She had a choice to do many things today, but she chose to ride a bike first. So we put the orthotics and running shoes on for the first time since before surgery.
That was amazing. No more coaxing of the ankle to bend, or bending at the knee to 90', in order to get the foot to rest completely down into the orthotic. The challenge I had was to keep her leg stable as I held her foot and orthotic. Her legs tend to want to fall open now, like frog legs. I guess that reflects the release that has occurred in her abductors. We will be keeping with the same orthotics. Some children don't like their orthotics after surgery because of foot sensitivity, but Fiona had no adverse reaction at all.
So she went for a ride on the bike, and we actually tested her ability to pedal herself. Once the foot came up to the crest of the rotation, she was able to use the momentum to push through and around. She could do a couple of pedals herself, before needed several pushes from the PT. Just as before, one side was stronger than the other. It seemed like the left side is stronger, even though it is/was more heavily affected by the tone and in-toeing. When I watched her pedaling from in front of the bike, I could see the right leg being better aligned to make a good pedaling movement, but she was actually using her left more, yet her left had a tendency to fall outward more. I have no idea what this all means in terms of strength and tone (a lot of ideas whirling around in my head), so I guess we will begin to fit the puzzle pieces together as the weeks and months go on.
From there, she chose to swing on a platform swing of all things! Not in a long-sit or anything, that would be too hard on the back at this point, but Beth placed a chair on the swing, with a block for support under her feet so that they did not dangle. I expected to see that "oh, my gosh, this roller coaster is making me sick" look on her face, but it never came.
In fact, I have to say that there have been some subtle sensory changes since the operation. Ex. They gave her a bath a couple of days ago, and before I had a chance to intercept, smeared a bunch of baby lotion on her. She barely reacted to either the sliminess or the strong powdery smell. After a couple of days of it, even I was getting nauseous. Then there was the swinging today.
The best part of swinging actually, was that we WALKED to get there. Now, the way we walked was I was in front of her holding both hands and knee-walking backward. Beth was behind her providing support at the hips, and the occasional tap on the hamstring to help with motor-planning. Fiona was advancing her legs on her own! She was kind of bent at the knees, but not a crouch, just weakness, and that darn left leg kept wanting to fall open, but otherwise, she was making full heel plants, with feet pointed straight ahead and completely reciprocal movement. Legs are moving very fluidly and separately. She was very happy, and at once point suggested she would do it herself (a memory from the past emerging). We had to put a stop to that one pretty quick.
After swinging, we went to sit on a bench to do a puzzle. She had to stand up and grab a piece from me holding it up in the air (we've seen this one before) or she had to reach in different directions while standing. "Standing" was kind of difficult. A little bent at the knees, difficult to sustain, and she was already trying to cheat, but that's no surprise.
So that was PT for today. By all accounts she is doing very well. We came back to the room for a hair-washing, which she complained more about. She is happily walking DVDs again, and I need lunch! (it's 4:30pm)
I have video of today's events, which I will attempt to post later. Only a few minutes here and there. Unfortunately, because I was helping, I couldn't video tape the walking, and that was the most exciting part.
I'm off to get food. Until later.
She was still loopy, not as much, but clearly the weakness revealed by the surgery was in it's earliest, purest form. She can sit up nice and straight with a straight head, but likes to llllleeeeeeeeeeeeeaaannnnnnnnnn back, so you can't leave her alone to sit on a bench. She had a choice to do many things today, but she chose to ride a bike first. So we put the orthotics and running shoes on for the first time since before surgery.
That was amazing. No more coaxing of the ankle to bend, or bending at the knee to 90', in order to get the foot to rest completely down into the orthotic. The challenge I had was to keep her leg stable as I held her foot and orthotic. Her legs tend to want to fall open now, like frog legs. I guess that reflects the release that has occurred in her abductors. We will be keeping with the same orthotics. Some children don't like their orthotics after surgery because of foot sensitivity, but Fiona had no adverse reaction at all.
So she went for a ride on the bike, and we actually tested her ability to pedal herself. Once the foot came up to the crest of the rotation, she was able to use the momentum to push through and around. She could do a couple of pedals herself, before needed several pushes from the PT. Just as before, one side was stronger than the other. It seemed like the left side is stronger, even though it is/was more heavily affected by the tone and in-toeing. When I watched her pedaling from in front of the bike, I could see the right leg being better aligned to make a good pedaling movement, but she was actually using her left more, yet her left had a tendency to fall outward more. I have no idea what this all means in terms of strength and tone (a lot of ideas whirling around in my head), so I guess we will begin to fit the puzzle pieces together as the weeks and months go on.
From there, she chose to swing on a platform swing of all things! Not in a long-sit or anything, that would be too hard on the back at this point, but Beth placed a chair on the swing, with a block for support under her feet so that they did not dangle. I expected to see that "oh, my gosh, this roller coaster is making me sick" look on her face, but it never came.
In fact, I have to say that there have been some subtle sensory changes since the operation. Ex. They gave her a bath a couple of days ago, and before I had a chance to intercept, smeared a bunch of baby lotion on her. She barely reacted to either the sliminess or the strong powdery smell. After a couple of days of it, even I was getting nauseous. Then there was the swinging today.
The best part of swinging actually, was that we WALKED to get there. Now, the way we walked was I was in front of her holding both hands and knee-walking backward. Beth was behind her providing support at the hips, and the occasional tap on the hamstring to help with motor-planning. Fiona was advancing her legs on her own! She was kind of bent at the knees, but not a crouch, just weakness, and that darn left leg kept wanting to fall open, but otherwise, she was making full heel plants, with feet pointed straight ahead and completely reciprocal movement. Legs are moving very fluidly and separately. She was very happy, and at once point suggested she would do it herself (a memory from the past emerging). We had to put a stop to that one pretty quick.
After swinging, we went to sit on a bench to do a puzzle. She had to stand up and grab a piece from me holding it up in the air (we've seen this one before) or she had to reach in different directions while standing. "Standing" was kind of difficult. A little bent at the knees, difficult to sustain, and she was already trying to cheat, but that's no surprise.
So that was PT for today. By all accounts she is doing very well. We came back to the room for a hair-washing, which she complained more about. She is happily walking DVDs again, and I need lunch! (it's 4:30pm)
I have video of today's events, which I will attempt to post later. Only a few minutes here and there. Unfortunately, because I was helping, I couldn't video tape the walking, and that was the most exciting part.
I'm off to get food. Until later.
PT again this morning
Hi. Just a quick post to let everyone know that Fiona is still doing better and better. She didn't require any pain medication all through the night. She only woke up to get drinks of water. When she got up this morning, she was really crabby. Unfortunately, I have to say it was a bit like the old Fiona, which is comforting in a way, but hard to take being yelled at and ordered around and not being able to leave her to get that morning coffee! She's mad about having to wear the diaper, and was having tummy problems because they overdid it a little on the stool softeners. So that was our major pain issue this morning - GAS! I managed to get her to the toilet herself, and she was a little lighter going to therapy.
I finally found the one show that she was happy about watching, which gave me 20 minutes to dart downstairs to get coffee and food to supplement my own Tylenol dose.
So PT was a continuation of review of post-SDR exercises. We have a book to show us the exercises, but we're just getting pointers on what is realistic to expect in these first couple of weeks. Also, how to gradually increase the difficulty of the exercise based on how she is doing.
A special message for Brenda B.: One of the exercises is "the bridge". The PT started by saying that this was really difficult for them and we will have to help her raise her bum for the first while. So then we show Fiona the picture of the exercise and she pipes up "hey mummy, that's the bridge like yoga". She then proceeds to lift her bum up by herself and hold it. The PT says, "Alright then, she can do that one I guess!"
In general, Fiona seems to be doing much more than expected. I'm surprised for a number of reasons but particularly because she is so out of it, from medication. You would think her strength is impacted even more so. We got the o.k. to make a trip to the zoo before our flight tomorrow, so that's great. The weather is supposed to be nice.
She has been sleeping ever since we got back from PT at 11:30am (It's 1pm now). I have to get her up and going at 1:30, for the next PT session at 2pm. I guess they will try to get her up on her feet this afternoon. We tried that a little bit this morning, but she was very weak and jello-like in her legs.
Since she went all night without pain medication, I am going to try to skip the Tylenol and see if that helps her be less floppy and more aware. The nurses will have it ready for when we get back. I also skipped her noon feed, so that her stomach could settle some more. It just seems that everything is an experiment to try to make Fiona both feel better and perform better (or at least get the most out of these first PT sessions).
I am not feeling very well this morning. A bit headachey myself. Probably just everything catching up with me. But you know how that goes... I was riding up the elevator with another mother from this floor (neurosurgery) and asked "what are you in for?". She described that her 9 year old boy was in for his 4th brain surgery to remove tumors, and for him to get radiation. She also said he has lost his speech as a result of the surgery and that all the research shows that it will come back but the time-line is from 8 days to 52 months (yes, I said months). She has 4 children - 17, 9, 7 and 5.
I felt my heart swell with empathy for this mother, but also with joy for me. I just about did a jig back to my room being overwhelmed with how fortunate we are.
I finally found the one show that she was happy about watching, which gave me 20 minutes to dart downstairs to get coffee and food to supplement my own Tylenol dose.
So PT was a continuation of review of post-SDR exercises. We have a book to show us the exercises, but we're just getting pointers on what is realistic to expect in these first couple of weeks. Also, how to gradually increase the difficulty of the exercise based on how she is doing.
A special message for Brenda B.: One of the exercises is "the bridge". The PT started by saying that this was really difficult for them and we will have to help her raise her bum for the first while. So then we show Fiona the picture of the exercise and she pipes up "hey mummy, that's the bridge like yoga". She then proceeds to lift her bum up by herself and hold it. The PT says, "Alright then, she can do that one I guess!"
In general, Fiona seems to be doing much more than expected. I'm surprised for a number of reasons but particularly because she is so out of it, from medication. You would think her strength is impacted even more so. We got the o.k. to make a trip to the zoo before our flight tomorrow, so that's great. The weather is supposed to be nice.
She has been sleeping ever since we got back from PT at 11:30am (It's 1pm now). I have to get her up and going at 1:30, for the next PT session at 2pm. I guess they will try to get her up on her feet this afternoon. We tried that a little bit this morning, but she was very weak and jello-like in her legs.
Since she went all night without pain medication, I am going to try to skip the Tylenol and see if that helps her be less floppy and more aware. The nurses will have it ready for when we get back. I also skipped her noon feed, so that her stomach could settle some more. It just seems that everything is an experiment to try to make Fiona both feel better and perform better (or at least get the most out of these first PT sessions).
I am not feeling very well this morning. A bit headachey myself. Probably just everything catching up with me. But you know how that goes... I was riding up the elevator with another mother from this floor (neurosurgery) and asked "what are you in for?". She described that her 9 year old boy was in for his 4th brain surgery to remove tumors, and for him to get radiation. She also said he has lost his speech as a result of the surgery and that all the research shows that it will come back but the time-line is from 8 days to 52 months (yes, I said months). She has 4 children - 17, 9, 7 and 5.
I felt my heart swell with empathy for this mother, but also with joy for me. I just about did a jig back to my room being overwhelmed with how fortunate we are.
Monday, April 6, 2009
This is Fiona... This is Fiona on Valium
We had our 2nd PT session this afternoon. It went really well. Only problem was that the medications were off a bit. We wanted to have Tylenol about a 1/2 hour before but because she had had Tylenol with Codene at 1pm, we couldn't give her more until 5pm. We were able to give her Valium, which was better than nothing, but it made her a little loopy.
So I managed to get her out of bed and into the chair myself. I had a nurse watch me. Fiona was happy to be going on an outing. I put a regular T-shirt on her so she could feel somewhat better. We took the Get Well Book that her friends from school made. Her head was kind of drooping to the right, and she appeared really sleepy. She wanted regular socks too.
When we arrived, we were greeted by Michael, whom she had met last week for the intake evaluation. I don't need to say much more, because I took a bunch of video. Basically, he went over a few of the crucial exercises we need to be doing after SDR, and how they are different because of having had the surgery.
There's a lot of video, so I hope this works. So don't be alarmed everyone. Her weakness is typical for Day 3 after this surgery, but actually, I think today's weakness is more about Valium than surgery. You will be able to tell by the way she is talking.
Before I show you videos, I wanted to mention the visit we had from Nel.
Here's some video. I took it to help me remember everything about the exercises, so it will get boring - don't feel compelled to watch it all. All the therapists and Doug will probably appreciate what's going on in this video. I'm sorry I loaded the longest one - about 24 minutes. What was I thinking? Nevertheless, if anyone wants to see more, the others are anywhere from 1 to 2 1/2 minutes.
So I managed to get her out of bed and into the chair myself. I had a nurse watch me. Fiona was happy to be going on an outing. I put a regular T-shirt on her so she could feel somewhat better. We took the Get Well Book that her friends from school made. Her head was kind of drooping to the right, and she appeared really sleepy. She wanted regular socks too.
When we arrived, we were greeted by Michael, whom she had met last week for the intake evaluation. I don't need to say much more, because I took a bunch of video. Basically, he went over a few of the crucial exercises we need to be doing after SDR, and how they are different because of having had the surgery.
There's a lot of video, so I hope this works. So don't be alarmed everyone. Her weakness is typical for Day 3 after this surgery, but actually, I think today's weakness is more about Valium than surgery. You will be able to tell by the way she is talking.
Before I show you videos, I wanted to mention the visit we had from Nel.
Here's some video. I took it to help me remember everything about the exercises, so it will get boring - don't feel compelled to watch it all. All the therapists and Doug will probably appreciate what's going on in this video. I'm sorry I loaded the longest one - about 24 minutes. What was I thinking? Nevertheless, if anyone wants to see more, the others are anywhere from 1 to 2 1/2 minutes.
Forgot to mention something about her hips
I forgot to mention something about Fiona's hip x-rays. You remember, the ones with the comical comments from Dr. Park and his assistant?
Her left hip bone was sitting nicely in the socket, but the right was out slightly. I forget the degree that Dr. Park said (Doug, if you remember, please update the post). Nevertheless, it was quite obvious looking at the x-ray. So I feel like we did this just in time, or even with some time and damage to spare.
So fast forward to today's first PT session. When the PT tried to stretch the inside of her thighs by moving the whole leg gently out to the side (like a one-sided snow angel), there was a clear area of tightness on the right side, more than the left. So this was very revealing. I think we have always thought that her Adductors were not as involved as the hamstrings or gastrocs, but now that the spasticity is reduced or gone, we can tell that there is some muscle-shortening in that area too. And that certainly would have caused problems with her hips.
My little Fi is awake, but not so happy. She is kind of whimpering and for the first time, when I asked her if her back hurt, she said yes. And when I asked her if she wanted medicine for it, she said yes. T.V. is a bit of a distraction, but the medication is on it's way.
Chris
Her left hip bone was sitting nicely in the socket, but the right was out slightly. I forget the degree that Dr. Park said (Doug, if you remember, please update the post). Nevertheless, it was quite obvious looking at the x-ray. So I feel like we did this just in time, or even with some time and damage to spare.
So fast forward to today's first PT session. When the PT tried to stretch the inside of her thighs by moving the whole leg gently out to the side (like a one-sided snow angel), there was a clear area of tightness on the right side, more than the left. So this was very revealing. I think we have always thought that her Adductors were not as involved as the hamstrings or gastrocs, but now that the spasticity is reduced or gone, we can tell that there is some muscle-shortening in that area too. And that certainly would have caused problems with her hips.
My little Fi is awake, but not so happy. She is kind of whimpering and for the first time, when I asked her if her back hurt, she said yes. And when I asked her if she wanted medicine for it, she said yes. T.V. is a bit of a distraction, but the medication is on it's way.
Chris
Direct Care: The Hard to Find Resource
I felt compelled to share something I just read in my Cerebral Palsy Magazine - March 2009. It is an article that talks about how difficult it is for people with a mobility affected life to find help with bathing, feeding, dressing, meal preparation etc. I hope Fiona will never need these services, but as a human being, I am concerned about the problem and found the comments about unemployment interesting.
"With unemployment hitting record highs, why is our disabled community still suffering for help? Most everyone you meet can assist a mobility disabled individual, but will they? Using private survey statistics for disability daycare, eldercare, TBI and stroke facilities - the independent survey results show 95% of Americans would let their home go into foreclosure before doing this type of work." Shocking!
"There are still immigrants coming to this country in large numbers. Why? Is it because there are jobs? They are mainly jobs that Americans have no interest in doing..."
Fiona is wide awake and watching TV again.
"With unemployment hitting record highs, why is our disabled community still suffering for help? Most everyone you meet can assist a mobility disabled individual, but will they? Using private survey statistics for disability daycare, eldercare, TBI and stroke facilities - the independent survey results show 95% of Americans would let their home go into foreclosure before doing this type of work." Shocking!
"There are still immigrants coming to this country in large numbers. Why? Is it because there are jobs? They are mainly jobs that Americans have no interest in doing..."
Fiona is wide awake and watching TV again.
Just a little bit of PT went a long way
Well, PT has just left and Fiona is passed out cold.
Today's goal was first to be stretched very slightly. Hamstrings, Abductors or is it Adductors?(inside thigh) and Gastrocs (bending at the ankle while keeping the leg pretty straight). This was to warm the muscles for movement. She tolerated this really well. The therapist got more range than I have ever seen from Fiona, and she was kind of just day-dreaming through it all. The therapist asked her to let her know if it hurts, but I told her, she would likely just resist and pull her leg away.
Next she was brought to a sitting position on the edge of the bed. We got there by first rolling to her side, then tilting up without twisting. She is free to twist as she is comfortable, but we cannot. She's a little pillar of strength. I could tell that the Tylenol was working because her eyes were closing already, but her trunk and head were straight up and down. She has better posture than I do! She was not talking much, and all along we were asking her if she had "owies" anywhere, but no response.
Next the therapist gave her a big hug with one arm wrapped around her back, and then the other arm goes under her legs to support her hips, and lifted her into her Convaid chair. No pillow or anything! She said she had intended to belt her in, but Fiona was holding herself up.
Then the big hick-ups started. She still was not showing any signs of pain, but the therapist thought the hick-ups were pretty forceful. I also suggested that the hick-ups could be a stress reaction because she doesn't want to tell us that she is uncomfortable.
I feel like I have to translate for everyone into Fionish. Fionish is really just a dialect of English. Actually, it is truncated English to accommodate her information processing challenges. I would think that many children with CP have processing issues, but it never ceases to amaze me how therapists use TOO MANY WORDS to ask a question. Not their fault of course, and how could they know which word triggers the idea for each kid? I just have to laugh, because I feel like we are at the United Nations.
Example:
Therapist says: "Fiona, can you tell me if anything is hurting you?"
Chris translates: "Fiona. Tell mummy. Do you have owies?"
Therapist says: "Fiona, are you o.k. sitting in your chair a little longer, or would you like to go back to bed?"
Chris translates: "Fiona. Tell mummy. Up (pause) or Bed?.
Then Fiona started raising herself away from the back of the chair to sit up in it without leaning against the back. Such strength. Still no signs of pain, but hick-ups still there. The therapist asked me and her if she wanted to go back to bed, but she seemed fine. I got an idea, that maybe Fiona and I should be left alone for the truth to come out. Therapist said "o.k., I'll be back in only minutes".
Sure enough, Fiona tried to sit up again, she looked a little queasy and started crying. I asked again about the owie on her back and she said yes. She must have been making a brave attempt for the new person, but couldn't articulate that she was done.
So we went back from the chair to sitting on the edge of the bed, then we raised the head of the bed a little more and laid her back down, and put a roll under her legs. She went to sleep immediately.
A very brave and successful first movement! Yay Fiona. The therapist told me that in many cases, although children want out of bed for the two recovery days, when it actually comes time to do it, they have great difficulty, and she ends up laying them right back down without moving to the chair. So I think Fiona has accomplished a huge amount this morning!
Speaking of movement, for all my nurse friends: Big BM on her own yesterday. Sorry for the gory details folks. IV also came out in the middle of the night. Fiona was really restless, and finally I figured out that she wanted to sleep on her stomach. She practically went to that position herself, I just helped a little and tried to protect the IV hand, but it was done. She went straight to sleep as soon as she was on her stomach.
So I have to move her into the chair for this afternoon's PT session. I asked the PT to come and supervise me, just to make sure I don't twist the wrong way. We are always in such a hurry in our lives and I am used to just picking her straight up, tossing her onto my left arm, grabbing everything else with the right, and almost sprinting to where we need to be. At 42 lbs, this is fast becoming a challenge and potential injury for both of us, so I have slowed down, but I am still not used to protecting a particular area of her body.
I only took a couple of pictures of the whole process. I too have information processing issues, so I wanted to be listening to and watching the PT, and couldn't be photographer as well. I really wanted to take a picture of the therapist stretching her, because the way her legs look and move is quite remarkable, but I didn't want Fiona to feel like a spectacle. I needed Doug to be in the background with the zoom lens.
I tried to add a short video and some pictures to this post, but I don't know if it will work. I might have to send them to Doug to add. Looks like short video might have worked but pictures don't.
So I'll let you know how things go later this afternoon with round 2.
p.s. It's snowing here!
Today's goal was first to be stretched very slightly. Hamstrings, Abductors or is it Adductors?(inside thigh) and Gastrocs (bending at the ankle while keeping the leg pretty straight). This was to warm the muscles for movement. She tolerated this really well. The therapist got more range than I have ever seen from Fiona, and she was kind of just day-dreaming through it all. The therapist asked her to let her know if it hurts, but I told her, she would likely just resist and pull her leg away.
Next she was brought to a sitting position on the edge of the bed. We got there by first rolling to her side, then tilting up without twisting. She is free to twist as she is comfortable, but we cannot. She's a little pillar of strength. I could tell that the Tylenol was working because her eyes were closing already, but her trunk and head were straight up and down. She has better posture than I do! She was not talking much, and all along we were asking her if she had "owies" anywhere, but no response.
Next the therapist gave her a big hug with one arm wrapped around her back, and then the other arm goes under her legs to support her hips, and lifted her into her Convaid chair. No pillow or anything! She said she had intended to belt her in, but Fiona was holding herself up.
Then the big hick-ups started. She still was not showing any signs of pain, but the therapist thought the hick-ups were pretty forceful. I also suggested that the hick-ups could be a stress reaction because she doesn't want to tell us that she is uncomfortable.
I feel like I have to translate for everyone into Fionish. Fionish is really just a dialect of English. Actually, it is truncated English to accommodate her information processing challenges. I would think that many children with CP have processing issues, but it never ceases to amaze me how therapists use TOO MANY WORDS to ask a question. Not their fault of course, and how could they know which word triggers the idea for each kid? I just have to laugh, because I feel like we are at the United Nations.
Example:
Therapist says: "Fiona, can you tell me if anything is hurting you?"
Chris translates: "Fiona. Tell mummy. Do you have owies?"
Therapist says: "Fiona, are you o.k. sitting in your chair a little longer, or would you like to go back to bed?"
Chris translates: "Fiona. Tell mummy. Up (pause) or Bed?.
Then Fiona started raising herself away from the back of the chair to sit up in it without leaning against the back. Such strength. Still no signs of pain, but hick-ups still there. The therapist asked me and her if she wanted to go back to bed, but she seemed fine. I got an idea, that maybe Fiona and I should be left alone for the truth to come out. Therapist said "o.k., I'll be back in only minutes".
Sure enough, Fiona tried to sit up again, she looked a little queasy and started crying. I asked again about the owie on her back and she said yes. She must have been making a brave attempt for the new person, but couldn't articulate that she was done.
So we went back from the chair to sitting on the edge of the bed, then we raised the head of the bed a little more and laid her back down, and put a roll under her legs. She went to sleep immediately.
A very brave and successful first movement! Yay Fiona. The therapist told me that in many cases, although children want out of bed for the two recovery days, when it actually comes time to do it, they have great difficulty, and she ends up laying them right back down without moving to the chair. So I think Fiona has accomplished a huge amount this morning!
Speaking of movement, for all my nurse friends: Big BM on her own yesterday. Sorry for the gory details folks. IV also came out in the middle of the night. Fiona was really restless, and finally I figured out that she wanted to sleep on her stomach. She practically went to that position herself, I just helped a little and tried to protect the IV hand, but it was done. She went straight to sleep as soon as she was on her stomach.
So I have to move her into the chair for this afternoon's PT session. I asked the PT to come and supervise me, just to make sure I don't twist the wrong way. We are always in such a hurry in our lives and I am used to just picking her straight up, tossing her onto my left arm, grabbing everything else with the right, and almost sprinting to where we need to be. At 42 lbs, this is fast becoming a challenge and potential injury for both of us, so I have slowed down, but I am still not used to protecting a particular area of her body.
I only took a couple of pictures of the whole process. I too have information processing issues, so I wanted to be listening to and watching the PT, and couldn't be photographer as well. I really wanted to take a picture of the therapist stretching her, because the way her legs look and move is quite remarkable, but I didn't want Fiona to feel like a spectacle. I needed Doug to be in the background with the zoom lens.
I tried to add a short video and some pictures to this post, but I don't know if it will work. I might have to send them to Doug to add. Looks like short video might have worked but pictures don't.
So I'll let you know how things go later this afternoon with round 2.
p.s. It's snowing here!
Sunday, April 5, 2009
Her Legs Feel "Normal"!
Fiona is doing great. She is completely off the Fentanyl, and as a result was also able to come off all the leads (the cords that measure heart rate, oxygen saturation and repirations). She still has her IV in, for the Valium, but the cord isn't attached to the Fentanyl pump anymore, so she is free to move her arms around. The last time she was bathed and changed, she wanted to lie on her back, so she went to sleep with her arms above her head. Her dad likes to sleep that way too.
She is currently awake, chewing on a cheerio and watching Sprout. The TV in her room is great. It is a small screen that is attached to what looks like the Canada space arm. So she can be in any position in the bed, and the TV can be brought to her eye level.
It was a grey day today, and I didn't get out for a walk, mostly because she was awake a lot more, and I didn't want to leave her. I did enjoy an afternoon Blizzard (the Dairy Queen kind - the cafeteria makes them... very dangerous for someone in search of comfort food) and a big plate of macaroni and cheese.
So on to the real excitement on this post. I have been trying to assess the condition of her legs. I read that you can tell the difference immediately, but I didn't want to man-handle her too much. Today, after changing and rolling her, I couldn't resist. I took a hold of each leg, and gently tried to straighten it, and it went! Toward the end of the movement, Fiona pushed back, but she has so much more extension than before. Then I gently held her foot in the palm of my hand, while pressing down on her thigh. Then I tried to bend her foot at the ankle. Again success! Her left foot is still a little turned in, and she resists more on that side, but she is not in any pain or complaining when I do this. In a nutshell, when I just pick up her leg, it is like Maddi's. Loose but not floppy. She is in control of the movement of her leg and resists me at certain points, but she is also relaxed. It is like new legs. Doesn't even seem like the same kid. Because of all the sheets and blankets, it seems like the top half is Fiona and the bottom half is a leg transplant. It is very surreal for me. I am VERY happy. Still, there is a little sense of loss. Those other little stiff legs served her the best they could. They are the same legs. See. I'm having trouble even accepting that! Same legs only better.
Now I am VERY curious to see how strong she will be on her feet. I guess we won't find that out until tomorrow afternoon.
Another nice surprise was that her feet don't seem any more sensitive than they were before the operation. I had read that there is extra sensitivity (like pins and needles) after SDR. She kind of reacts when anyone messes with her socks, but nothing drastic. She is able to splay her toes as well. The increased sensitivity may reveal itself when she is bearing weight.
I am so excited to see her in PT tomorrow! I can't wait for her to be off all the drugs, to see if she can articulate how her legs are feeling for her. As much as we all might think this will be a great feeling for Fiona, she has not known anything else in her life but tone, so the change could be very unsettling for her. It might even feel bad too her. I have to be prepared for this as well.
I'm going to go feed her, and try to take some pictures.
She is currently awake, chewing on a cheerio and watching Sprout. The TV in her room is great. It is a small screen that is attached to what looks like the Canada space arm. So she can be in any position in the bed, and the TV can be brought to her eye level.
It was a grey day today, and I didn't get out for a walk, mostly because she was awake a lot more, and I didn't want to leave her. I did enjoy an afternoon Blizzard (the Dairy Queen kind - the cafeteria makes them... very dangerous for someone in search of comfort food) and a big plate of macaroni and cheese.
So on to the real excitement on this post. I have been trying to assess the condition of her legs. I read that you can tell the difference immediately, but I didn't want to man-handle her too much. Today, after changing and rolling her, I couldn't resist. I took a hold of each leg, and gently tried to straighten it, and it went! Toward the end of the movement, Fiona pushed back, but she has so much more extension than before. Then I gently held her foot in the palm of my hand, while pressing down on her thigh. Then I tried to bend her foot at the ankle. Again success! Her left foot is still a little turned in, and she resists more on that side, but she is not in any pain or complaining when I do this. In a nutshell, when I just pick up her leg, it is like Maddi's. Loose but not floppy. She is in control of the movement of her leg and resists me at certain points, but she is also relaxed. It is like new legs. Doesn't even seem like the same kid. Because of all the sheets and blankets, it seems like the top half is Fiona and the bottom half is a leg transplant. It is very surreal for me. I am VERY happy. Still, there is a little sense of loss. Those other little stiff legs served her the best they could. They are the same legs. See. I'm having trouble even accepting that! Same legs only better.
Now I am VERY curious to see how strong she will be on her feet. I guess we won't find that out until tomorrow afternoon.
Another nice surprise was that her feet don't seem any more sensitive than they were before the operation. I had read that there is extra sensitivity (like pins and needles) after SDR. She kind of reacts when anyone messes with her socks, but nothing drastic. She is able to splay her toes as well. The increased sensitivity may reveal itself when she is bearing weight.
I am so excited to see her in PT tomorrow! I can't wait for her to be off all the drugs, to see if she can articulate how her legs are feeling for her. As much as we all might think this will be a great feeling for Fiona, she has not known anything else in her life but tone, so the change could be very unsettling for her. It might even feel bad too her. I have to be prepared for this as well.
I'm going to go feed her, and try to take some pictures.
Madagascar rules!
Maddi INSISTED that I add these penguins!
I just had to write a quick update. I thought it was time to look for a new TV show and Fiona agreed. We were lucky enough to find the movie Madagascar playing - a favorite of Fiona's. When she realized what we found, I got a big smile and she said "silly penguins!" Fiona is back.
(I might have to change the channel temporarily if the "I like to move it, move it" part comes on)
Another Sleepy Day
Fiona had an even more peaceful night last night, and is still sleeping very soundly. I am approaching boredom and miss Doug. I'm trying to introduce more and more food (formula) to Fiona's system. The better she tolerates food, the sooner the IV can come out.
Today will probably be a long day because she is required to stay put in bed, but all the heavy- duty medications are being reduced. I went to get the story books and DVDs from the car, and there's always T.V. so I should be able to convince her to stay put. She is still not speaking much. Only to say very loudly "I want to go home now". Supposedly, the Fentanyl makes the kids cranky, but that doesn't seem to be the case with Fiona. She is just making very rational and normal requests to be done with all of this. The nurses keep commenting on how "good" she is, whatever that means.
She just woke up and asked to "get up". I explained that tomorrow there would be lots of getting up, but not today. The Mickey Mouse Clubhouse is making that idea more tolerable.
I slept in a reclining chair next to Fiona's bed, that was surprisingly comfortable. I stayed up late watching a movie, and was awakened by the neurosurgical resident at 7:30am. He did not add anything new.
I forgot to mention that Dr. Park did come by yesterday. Again, a man of few words. He just went over, peered at her up and down and said "she looks good". Lifted up the sheet and said "Fiona, can you move your legs?" Fiona wiggled each one, and he said "good". I certainly hope that wasn't his version of checking for paralysis, but I wouldn't be surprised. We have known that everything was working since back in the PICU. The nurses there were required to do periodic neurological screenings that included shining a light into her eyes, to check for pupil reactivity, and getting her to push her feet against their hands, and squeeze their fingers with her hands. I could see her responding and there was lots of strength even on the day of surgery.
I know that some of you are having trouble leaving comments on the blog, and also that it might be requiring you to sign up on google. Don't worry about all of that. We know you are all keeping track, and you can send emails to me if you want. It has just been fun to have a way to document this experience and keep a very large group of people informed all at once.
I am going to catch up on some reading. A big hello to Jacob and Liz who I know are watching. Fiona is very happy to know you are following her blog.
Chris
Today will probably be a long day because she is required to stay put in bed, but all the heavy- duty medications are being reduced. I went to get the story books and DVDs from the car, and there's always T.V. so I should be able to convince her to stay put. She is still not speaking much. Only to say very loudly "I want to go home now". Supposedly, the Fentanyl makes the kids cranky, but that doesn't seem to be the case with Fiona. She is just making very rational and normal requests to be done with all of this. The nurses keep commenting on how "good" she is, whatever that means.
She just woke up and asked to "get up". I explained that tomorrow there would be lots of getting up, but not today. The Mickey Mouse Clubhouse is making that idea more tolerable.
I slept in a reclining chair next to Fiona's bed, that was surprisingly comfortable. I stayed up late watching a movie, and was awakened by the neurosurgical resident at 7:30am. He did not add anything new.
I forgot to mention that Dr. Park did come by yesterday. Again, a man of few words. He just went over, peered at her up and down and said "she looks good". Lifted up the sheet and said "Fiona, can you move your legs?" Fiona wiggled each one, and he said "good". I certainly hope that wasn't his version of checking for paralysis, but I wouldn't be surprised. We have known that everything was working since back in the PICU. The nurses there were required to do periodic neurological screenings that included shining a light into her eyes, to check for pupil reactivity, and getting her to push her feet against their hands, and squeeze their fingers with her hands. I could see her responding and there was lots of strength even on the day of surgery.
I know that some of you are having trouble leaving comments on the blog, and also that it might be requiring you to sign up on google. Don't worry about all of that. We know you are all keeping track, and you can send emails to me if you want. It has just been fun to have a way to document this experience and keep a very large group of people informed all at once.
I am going to catch up on some reading. A big hello to Jacob and Liz who I know are watching. Fiona is very happy to know you are following her blog.
Chris
Saturday, April 4, 2009
A Quiet Day
Bright and sunny - Fi and Doug take a nap!
The view from Fiona's PICU suite
Getting ready for the big move from the PICU!
WHEEEE-HAH! Escape!
OK, maybe not ESCAPE, but still a change of scenery!
View from the new digs. Kind of industrial but cool.
Let me first say that in addition to checking this blog for your wonderful comments, I also am able to check the other two email addresses, so I have received all your warm wishes. I hope to get back to each of you personally, when there is more time. Actually, what am I saying? I sort of have all the time in the world right now, but I'm just choosing to sleep and watch a lot of T.V.
I slept most of the day with Fiona. Sheesh, you would think that I got the Valium right along with her! She is very comfortable. When she does wake up, she answers all my questions, asks to go pee and was quite upset when I told her she would have to use the diaper. I think this is a good sign on many levels. Her bed is inclined at a about a 30' angle. No more is allowed. She also has to be rolled from side to side for position or bedding changes. No lifting of the legs! I have really not seen any signs of pain from her. Her complaints seemed to be centered around the confinement to the bed. We just need to get through tomorrow, and then we will really want her up and around on Monday.
After my last post, we moved up to the 12th floor, which is the neurosurgical recovery unit. We have a very experienced nurse, Anne, who was here with us until 7pm and will be back again at 7am. She informed me that she has been working with Dr. Park and his SDR patients since he has been doing the procedure. To explain just how long that has been, she said that she has been doing this since the recovery time was 21 days, and the children spent the first 10 days in bed! That is quite a change from today's process. I believe Dr. Park has been doing the SDR's here in St. Louis since 1987, and around 1993 is when he developed the new procedure that only removes one lamina to access the spinal cord. I can't believe there are still places around the country that continue to remove 3-5. Well, not really understanding the skill involved in performing this kind of surgery (which requires a microscope to properly isolate the nerves and rootlets), perhaps he is the only one who CAN work in that small area.
It was very interesting to talk to this nurse. She also asked how we had heard about the procedure. Everyone seems very curious to find that out, I guess because we are here from another area of the country. So I explain the somewhat dramatic turn of events, and coincidence and luck and in-the-right-place-at-the-right-time situation with being a part of Teresa's NDT course, and how Teresa suggested we do some research and how we came to make this choice. Doug explained the level of research we had done, including all the medical journals that were critical of the procedure.
I had Doug summarize the criticisms for me, so I could understand what weight they carried for me. Here they are for you to ponder too.
1) Dr. Park is extremely selective with the patients he accepts for this surgery, therefore in the minds of some statisticians, his success rate is skewed.
My response to this: And what is wrong with ensuring you pick only the patients who will have a good outcome? Doug went beyond this interpretation and actually spoke to a PhD statistician at Weyerhaeuser to find out what the significance of this was. (Doug can add the info from that conversation later...) We actually talked to the nurse about this. She added a very human story to all the statistics. She said there was a little girl Fiona's age who was very involved and very delayed. Her body was so rigid that her parents could not get her legs separated enough to properly diaper, clean and dress her. Dr. Park performed the procedure simply to relieve the child's pain, and assist the parents with care. That would not have been good for his statistics, because there was no walking expected, but he did it anyway.
Fiona just woke up. She wants water, and I offered her a cookie to lick. She took it very willingly! I just met the night nurse, and went over the plan. Fiona has spiked a little fever, which is to be expected with the Fentanyl (I was warned). It's only 101 right now, but the nurse is going to check with the doctor regardless. In talking to Fiona about how she feels, I asked "Are you feeling tired, or sick?" She replied "I feel tired". So that's great. She's been sweating like crazy - her usual self, so they are going to clean her up and roll her to another position. She is enjoying a show and some water as I type. Eyes wide open and content. Her auntie Fiona called from Australia and they had a little chat too.
For my medical friends:
heart rate around 150
respirations 20-25
O2 sat 95-100%
It's 9:00pm now and they just changed and rolled her to her other side. That seemed a little rough for her, but she is happily watching a show again. Valium is on it's way. The Valium is to help with the muscle spasms that may occur as a result of the alteration of the nerve pathways.
She has been nodding yes and no when nurses ask questions. The only time she has spoken is to chat with her Auntie Fiona, or to very pointedly ask me "When can I go home?". Of course I have explained the schedule to her as simply as I could, but I don't think she has a sense of time right now. So I have resorted to saying "pretty soon".
The plan is to cut her Fentanyl in 1/2 at 6:00am. It will be replaced with Tylenol either with Codeine or without. Codeine would be stronger, but the drawbacks of Codeine is that it causes constipation, and that would be the last thing she needs. I'm a little worried about the reduction in the narcotic form of pain management, but I know it is better for her to get her off of it as soon as possible.
So back to the criticisms of the procedure for a moment.
2) Some physicians say that simply increasing the amount of physical therapy to the levels that we are required for rehabilitation after SDR will achieve the same result.
This one made me laugh. All our therapist friends who know Fiona will know immediately that this would be an impossible plan for Fiona. Doug found the study that showed this result. And it is true, but only up to 5 years. So they studied children with SDR and high amounts of therapy time, and followed children who had the same therapy time, but no SDR. Results were similar until the point where therapy was reduced. In children who had had the SDR, improvements were maintained or continued even after therapy amounts were reduced; whereas, in order to maintain the gains, the non-SDR children had to continue with the same level of therapy.
So. Firstly, Fiona was having a very hard time participating effectively in her physical therapy sessions. I believe that most of the reason for this was the discomfort she was feeling from the tone and subsequent tightening of various muscle groups. She is not really at an age or cognitive level to be able to understand what is good for her, so it would be impossible to simply say "let's increase therapy". Secondly, I do not want a lifetime of physical therapy to be in her future. It will be an integral part of her life, for the rest of her life, but it should not be her whole life.
3) The last major criticism is that earlier claims from those performing SDRs were that there would be no orthopedic surgeries required as a result of having reduced or eliminated the spasticity.
If you catch children early enough, that can be a benefit; however, Dr. Park certainly doesn't claim this. In fact, he warned us that due to how much her feet have been turning in, and how long that this has been developing, that she may still need orthopedic surgery to correct the in-toeing. Orthopedic surgery means either some kind of tendon lengthening or re-positioning or bone alterations. I actually tried to get a consult with the orthopedic surgeon here, while we were here, thinking that I was being prudent. We were still at home when I got that idea, and it took a while for the spasticity management clinic to call me back, and during that time I realized that I was really jumping the gun. The head physical therapist confirmed this when she called me back. They like children to wait at least a year, to see how the SDR changes things. She said that what her legs look like before SDR and what an orthopedic surgeon would recommend would be completely different from a year from now. It becomes very revealing how much of the in-toeing is related to tone and how much is contractures or bone torsion. I am content to wait and see. Definitely not in any rush for more surgery.
In speaking with another parent whose child underwent SDR just over a year ago, I learned that what Dr. Park says will happen, happens and exactly when he says it will. Also, that we should follow his instructions to the letter. I really processed that when we had our first consultation with him. He said we will have to work hard to stretch her heel cords. We have always worked hard at this, but it has often been an uphill battle against the spasticity and her spicy attitude. But in his simple way, he demonstrated that good-old gastroc stretch that all us runners (or former runners in my case) know too well. Stand on the curb of the road on your tip-toes and bring your heels up and down in the air and feel the stretch. Goodness knows how I'll get Fiona to do that, but therapists are creative and we will figure out a way.
Well, it's just after 10pm, and I'm officially hungry now. Cafeteria is open until 2am. This is good and bad... Fiona has had her Valium and is in a happy place. A minute ago, it was kind of cute, a bell went off to indicate that the syringe was empty, and she let out a big voice and yelled "WHAT!?" and then went back to sleep.
My plans are to watch the movie Quantum of Solace. Fiona in Australia has been bugging me to watch this for quite some time. Apparently there is a scene from the Palio in the movie. The Palio is a 500 year old medieval horse race that takes place twice a year in Siena, Italy (in the region of Tuscany).
I know this is Fiona's blog, but I can't resist telling you a little bit about this race. It is the most fantastic sporting spectacle. I have been to it twice now (Doug and I on honeymoon in 1999, and Big Fiona and I in 2006). You spend hours getting into the city, placing yourself strategically in the main piazza for a good (free) view of the race. Then you are locked into that piazza for a number of hours. I think I remember it's something like from noon until 7pm. No bathroom breaks, no food and water sales. Standing room only, body to body with strangers. There is a lot of pomp and circumstance, and then the race lasts about 2 minutes. Twice around the piazza I believe. It is bareback, it is incredibly dangerous for both horses and riders (PETA despises this race, in fact several of my cousins boycott it because of this, uncharacteristically for me, I can't stay away - sorry hippo therapy friends). The horses represent the many neighborhoods of Siena, which has also not changed in 500 years. It is EVERYTHING to win this race. The participants spend the entire year planning for it. It is the horse that wins, not the rider, so the rider can fall off and be trampled, but the race goes on and the horse can still win. It's the rider's fault (and lifelong shame) if the horse loses. The winning horse gets to sit at a table with the mayor and enjoy a feast after the race. Maybe that's why I like the race. You are getting my drift now...
As a foreigner, you make sure not to cheer for any one contrada (neighborhood), just to keep yourself safe. Emotions run high. After the race, you run at full tilt to get OUT of the city before the riots start. You have no idea whether you will end up in the winning crowd, or the very upset losing crowd. I have witnessed grown men sobbing over the loss. Oh and by the way, the absolute worst result is to come in second place, because that means you almost had it but you couldn't pull through. A lot of life lessons in this race, I tell you.
O.K. so apparently James Bond has a chase scene during or after the Palio that pales in comparison to the 2km (1.6 miles) sprint that Big Fiona and I did trying to make our way through the unruly crowd to our departing train on the outskirts of the city. This, I am curious to see.
So think of me and Doug and Fiona the next time you watch that scene. I must say she comes by her strength honestly.
Good night everyone.
p.s. A big hello to Eva, Jenna, and Emily. I told Fiona that her friends have been reading about her, and her eyes got VERY big. I think that makes her happy.
All Hail the Caillou!
I'm back and fairly refreshed from a decent sleep. Doug, not so much... Fiona is doing great this morning. She got the catheter out (we can all appreciate that one) and she was detached from all of the leads so she can feel a little freer to move around. She just has the one IV that is delivering our much loved Fentanyl and Valium. It's 11:00am and we have already seen the neurosurgical resident (Dr. Park is not here this weekend) and they have written the orders for her to be transferred to the Neurosurgical unit. The doctors are in the process of rounds, so we are in lock-down in the PICU for another 1/2 hour or so. She has been chugalugging water by mouth, and I just gave her some applejuice in the tube, to see how her stomach will tolerate food. We should be able to get back on her regular feeding schedule by the end of today.
Fiona's is awake albeit very dozy. The head of her bed has been raised and she is enjoying one episode after another of Caillou. She's lying on her back! I expected her to be face-down for 3 days, so I'm not sure what to make of this. It's probably only happening because the meds are working. Our nurse, Holly, plans to give her a little bath before she leaves the PICU. Another sunny day is shining through Fiona's window. What a difference that makes!
Doug's flight is at 4:30pm. We just found out there is a train that is 2 blocks away from the hospital, that Doug can catch straight to the airport. How great is that?! The rental car will stay in the hospital parking lot with all Fiona's and my gear. Today and tomorrow will probably be pretty quiet and lonely without Doug. So that's when I'll pull out some of the paperwork I brought along - I'll get some stuff done during the down time.
Fiona's is awake albeit very dozy. The head of her bed has been raised and she is enjoying one episode after another of Caillou. She's lying on her back! I expected her to be face-down for 3 days, so I'm not sure what to make of this. It's probably only happening because the meds are working. Our nurse, Holly, plans to give her a little bath before she leaves the PICU. Another sunny day is shining through Fiona's window. What a difference that makes!
Doug's flight is at 4:30pm. We just found out there is a train that is 2 blocks away from the hospital, that Doug can catch straight to the airport. How great is that?! The rental car will stay in the hospital parking lot with all Fiona's and my gear. Today and tomorrow will probably be pretty quiet and lonely without Doug. So that's when I'll pull out some of the paperwork I brought along - I'll get some stuff done during the down time.
I received Fiona's PT schedule first thing this morning, along with a recommendation to make sure the nurses give her Tylenol 1/2 hour before. I think that first one is going to be rough.
So here's the schedule:
Monday: 8:00am (at bedside) and 3:00pm (4th floor)
During the morning session, they will train me on how to transfer her from the bed to the wheelchair, then I have to do it myself for the afternoon session.
Tuesday: 4th floor gym 10:00am and 2:00pm
I bring her to both PT sessions and she will be able to go to the playroom this day!
Wednesday: one 90-minute PT session in the morning
Discharge will be between 10 and 11:00am.
O.K. gotta go, they are ready to transfer Fiona to Neurosurgery.
Chris
05:30 and All Is Well
Well, Fiona has nearly made it through the first night post-op and it has been wonderfully uneventful! Her vital signs have been very stable and except for the four or five times she has opened her eyes and struggled to roll over, she has been out like a light! She did talk to me once and ask "Wha's happenin?" but she went back to sleep when I gave her the puppy to cuddle.
Chris is still at the hotel (I'm supposed to call her now and wake her up so we can do our own shift-exchange) but I think I'll let her sleep a bit longer.
Not much else to report so I think I'll go on the hunt around the hospital for COFFEE! Thanks to all of you who are posting words of encouragement! It helps to know you are out there pulling with us to get Fi through this!
Chris is still at the hotel (I'm supposed to call her now and wake her up so we can do our own shift-exchange) but I think I'll let her sleep a bit longer.
Not much else to report so I think I'll go on the hunt around the hospital for COFFEE! Thanks to all of you who are posting words of encouragement! It helps to know you are out there pulling with us to get Fi through this!
Friday, April 3, 2009
That Old Familiar Feeling.....
I finally convinced Chris to leave the hospital and go back to the hotel for one last, decent nights sleep while we still have the hotel room. She is returning at 6:00am and I will zoom back to pack and check-out. I am returning to Tacoma on Saturday but will return to St. Louis to bring Fi and Chris home on Wednesday.
We had a good day today. As Chris has told, Fiona drifts in and out and we see glimpses of her fire. She just awoke a few minutes ago and she challenged me to "Take me home now!" I believe this fire combined with a stubborn streak wider than the Mississippi that we saw yesterday will carry her to a most positive outcome. I am very confident that Chris' determination and love and Fi's spunky demeanor will overcome all else.
Out of gas....
Fiona staring at the bright pink light from the oxygen monitor
Sitting in the PICU, late at night, listening to monitors chirping and scurrying feet as nurses and doctors attend to this crisis or that, brought back memories from those long months in the NICU when the girls were born so long ago. I feel every aching heart, every tear shed, every smile risked as parents struggle to grasp the precarious nature of life and that helplessness that transcends all else.
Today I saw a mother as her emotions over such profound loss burst through for all to witness. I saw her friends and family stand helplessly by, hands by their sides, sideways glances born from that lack of understanding of how to interject. The pain of tear-streaked cheeks as another small and helpless soul slipped the surly bonds of earth. And it took me back.A small and oh, so innocent a bundle growing cold against my chest. Ripped from life and us by tragedy and circumstance. I miss her every day and more... And ALL THIS came flooding back. This dark night in St. Louis as monitors chirp and scurrying feet kick off the dust from wounds I thought had healed. And me here, telling you whom I mightn't even know. What will you make of this disclosure?
It Has Been a Quiet Day
Hi friends. Not much new to report. Fiona has been in a deep sleep most of the day and Doug and I have traded off on the reclining chair in her room.
Her blood pressure and vitals have been on the low side, so earlier today when it came time for more Valium, the nurse and I decided to hold off so as not to depress her system further. She was doing fine. Just before 8pm, she started fussing a little. I don't think she is feeling any pain, but she wants OUT. I asked her why she wanted to get out of the bed (I know, kinda stupid question) and she said "I just want to go home...." and burst into tears. Poor thing. She also started lifting her head and she got that look in her eyes, that I am well aware of - the plotting of escape. Like MacGyver, I could see her focusing on the wires and tubes trying to make a plan. If I cross the red one with the white one and cause a diversionary explosion in wing D, I can make my break...
Needless to say, we opted for more Valium. She went peacefully off, and I went to eat. Doug came back from the hotel shortly after, so he'll probably stay with us until midnight, and then head back to sleep there and pack up our stuff. He is going to pick me up around 5am, bring me back to the hotel for a shower and the free breakfast, then back to the hospital in time for doctor's rounds.
For my medical friends the stats are:
heart rate: hovering around 120-125
O2 saturation: 96%
respirations per min: 15-17
last blood pressure: 93/31 (47) always slightly under 50 with some higher spikes when the Valium was wearing off.
She was really upset at one point, and her O2 saturation dropped to the low 80s. She was crying and they asked her to take some big breaths. They left the mask blowing next to her head. She grabbed it and put it on her face. Everyone thought that was pretty cute and smart. It did the trick and everything went back to where it was supposed to be.
Well, it's 10:15pm and Doug and I are going to try to watch a movie from the laptop. Tomorrow will be a big moving day, so I will try to write more when we get settled in the new room.
Thank you for getting us through the day!
Her blood pressure and vitals have been on the low side, so earlier today when it came time for more Valium, the nurse and I decided to hold off so as not to depress her system further. She was doing fine. Just before 8pm, she started fussing a little. I don't think she is feeling any pain, but she wants OUT. I asked her why she wanted to get out of the bed (I know, kinda stupid question) and she said "I just want to go home...." and burst into tears. Poor thing. She also started lifting her head and she got that look in her eyes, that I am well aware of - the plotting of escape. Like MacGyver, I could see her focusing on the wires and tubes trying to make a plan. If I cross the red one with the white one and cause a diversionary explosion in wing D, I can make my break...
Needless to say, we opted for more Valium. She went peacefully off, and I went to eat. Doug came back from the hotel shortly after, so he'll probably stay with us until midnight, and then head back to sleep there and pack up our stuff. He is going to pick me up around 5am, bring me back to the hotel for a shower and the free breakfast, then back to the hospital in time for doctor's rounds.
For my medical friends the stats are:
heart rate: hovering around 120-125
O2 saturation: 96%
respirations per min: 15-17
last blood pressure: 93/31 (47) always slightly under 50 with some higher spikes when the Valium was wearing off.
She was really upset at one point, and her O2 saturation dropped to the low 80s. She was crying and they asked her to take some big breaths. They left the mask blowing next to her head. She grabbed it and put it on her face. Everyone thought that was pretty cute and smart. It did the trick and everything went back to where it was supposed to be.
Well, it's 10:15pm and Doug and I are going to try to watch a movie from the laptop. Tomorrow will be a big moving day, so I will try to write more when we get settled in the new room.
Thank you for getting us through the day!
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