I really want to write about something else, but this topic permeates everything we do on a daily basis around here. So, here's the short version.
After a slew of new doctor's appointments, we are struggling with a surgical decision. Elena suffers from crouch--many pictures posted don't show it, and I haven't posted many videos lately (we've been pretty busy with appointments...I feel like that's all I do these days). Anyone familiar with E's type of CP knows what I'm talking about. We've been dancing around the surgery question for three years now, trying to buy time.
Why? I guess to see if it's worth the risk. To see if she can get strong enough to "not need it" (is that a thing? In the long run, I mean?). To wait until she is more emotionally mature to deal with the aftermath (big one here). To see how she develops, to possibly have more choices in terms of procedures. To hope that technology provides a new option. All of these and more.
They want to do a femoral derotation osteotomy on her right leg, and hamstring lengthenings (traditional-style, not subcuteaneous) on both legs. The surgeon said that recovery is 4-6 weeks (for WHAT? That sounds ridiculously short), so I am assuming it would be 2-3 months of pain/rehab/slow recovery until we can get her moving regularly with a walker or crutches.
Has anyone out there done this? Do you know if my timeline assumptions are close?
My biggest issues with this are that our trusted PTs don't want this surgery (typically they stress PT, exercise, not surgery) and the surgeons aren't involved with the rehabilitation process so they can't prepare us. I've heard lots of bad stories about this procedure--my kid never walked right again, rehab took forever, they had complications (infections, etc.)--but I haven't heard any positive stories. They must be out there, or this procedure wouldn't be so commonplace. I did find one, an upbeat teen, but this story was long ago, and I couldn't tell if she had CP or not.
Here is our current plan. (ADD NUMBERS HERE FROM Dr's Report regarding crouch) Elena had a bad crouch/pain/kneecap fractures in the fourth grade. Once her pain subsided, we followed a rigorous Therapy Exercise (TherEx) program to regain strength, in the hope of halting her crouch. Not only did we keep her from getting worse, her posture actually got better--which was WAY beyond my expectations. She always regresses in the fall, and we continue this plan. This year is different, though, and her crouch is worse.
Elena is an almost-teenager and is highly resistant to me as her advisor and coach. This means more appointments, more therapists, more trainers (read: time consuming and expensive) when she already complains of having too much on her schedule. Her main PT has cut back on her sessions, b/c she said if we can't get our exercises done at home, going to PT alone isn't enough (she's absolutely right) so we're going to PT less often, and substituting in any exercise that she will do. It's a change that hopefully will get her fitness up, and add some enjoyment.
Our current schedule is
Monday, PT (every other week); Tuesday free (if nice, bike ride); Wednesday swim (private instruction); Thursday Personal Training (gym); Friday free; weekend includes swimming (family time--we do laps and then free play) and biking (I am also working on an indoor trainer for her trike). I have put out a want-ad for a TherEx facilitator to come to our home (hopefully 1-2x/week). I've taken out Psych services (now, I'm going to try to bridge the gap. We're not ready to "graduate").
It's six months until our ONLY window for surgery (if she has to have it during the school year, she won't be able to perform well in school or stay in her chorus group; summer is our best option). The plan is to hit TherEx/Exercise/Strength hard, and re-evaluate in 6 months. Maybe we could punt another year; I'm not convinced just putting it off is the best plan, either. But this is where we are.
If you have comments, I'd love to read them. Pass this along to anyone you know that might have some insight. Thank you!
Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts
Monday, November 13, 2017
Monday, September 21, 2015
Surgery consult, TherEx report, and Where we are Right Now
As many of you know, last year was a tough one for Elena. The knee pain issue was a huge one for her and our family. After seeing 4 different doctors (some several times), here is what I learned. Keep in mind, this information gathering took well over a year.
1. Elena had pretty bad knee pain. By "knee", I mean the area up/down/all encompassing her knee. Because of her high kneecaps (due to crouch gait--quads constantly pulling up on the patellas) sometimes it's hard for me to figure out if this is a muscle issue, connective tissue problem, or bone/alignment problem. My impression is the doctors didn't always know either.
We started with our main ortho, which assumed it was tendinitis. Elena got a new compression brace that was supposed to help retain her kneecap (a little; I don't think this really worked). It was hot to wear, but I think it alleviated pain mostly b/c it restricted her movement.
E complained of pain several times a week, ranging from pain level 2 to 7. I consider this extremely significant b/c I think she has a high threshold for pain, and decreased sensitivity due to her rhizotomy at age 4.
2. We finally figured out that her kneecaps were fractured. Same injury--most likely not from a fall, but from stress forces from crouch. Bones pulling apart, I imagine, is quite painful. I was angry an x-ray was not originally ordered (this was discovered during our third different ortho doctor visit). My impression is that this isn't terribly common, but it's not a huge surprise to doctors when this shows up on an x-ray. While it is upsetting...it's not worth fixing kneecaps unless you can help alleviate the cause of the fracture. Which means getting out of crouch.
3. NO DOCTORS AGREED. This was maddening. I am trying to make the best decision I can as a parent, but it's very stressful when you get conflicting recommendations from my best advisors.
So, here we are, nearly a year later. I have scheduled, then cancelled, two procedures for her. I finally got a consensus with the second ortho--which I initially felt good about his recommendation (tendon lengthening/knee capsule release) but I wanted to report why the other two procedures have been taken out for consideration.
Plan A: Do nothing. Ortho1 says E's knee pain "wasn't that bad" (I vehemently disagree). PT takes breaks to let E rest and try to minimize pain.
Plan B: Knee capsule release (cut to allow knee to fully straighten), tendon lengthening, possible hip flexor lengthening. Would be 6-8 weeks in full leg (not hip) casts. Ortho1 strongly discourages this idea.
Plan C: Ortho3 also discourages plan B. Recommends dual distal femoral osteotomies with patellar tendon shortening to bring down kneecaps. This plan involves much longer recovery (obviously). It is now springtime. PT introduces Therapy Exercise Program (TherEx), to work specific muscles to help postural strength. It's a lot of homework, but we do it. I am doubtful it will do more than keep the unsatisfactory status quo. E started seeing a massage therapist.
Plan D: Ortho1 changes mind and says yes something should be done to alleviate crouch. Recommends growth plate tethering in both legs (in essence, keeps the front of knees from growing while allowing the backs to grow--effectively "growing out of crouch". I worry about introducing a new bone deformity and look for someone to support this, as Ortho2 and Ortho3 do not).
It's been 2-3 months, and much to my surprise--Elena's crouch is lessening. I attribute this to the TherEx program, something I had close to zero confidence would do much of anything. Summer brings new challenges, more rest, more opportunities to stretch and move out of school. Elena's knee pain has lessened, her kneecaps are still high (I do not really expect this to change) but she is moving very well and hardly complains.
Last month we travel to Alfred I Dupont Nemours Children's Hospital, under a recommendation from our regular pediatrician (who doesn't know a lot about CP, but seems to know Elena better than her specialists). We see a developmental pediatrician and Ortho4. It's a lovely visit. Ortho4 disagrees with Plans C and D. He agreed with Ortho2 who said that the distal osteotomies wouldn't help her crouch, and there is a significant danger she would end up less mobile than now. He said that he has done several tethering procedures, and in his experience with CP kids like Elena, after a year (or so) when the plates are removed, there is a net zero gain--growth and spasticity don't mix well, and the tethering basically kept the crouch the same instead of getting worse after it was all over. He supported Plan B, almost identically (I didn't tell him what the other doctors had recommended). He was confident this would lessen her crouch, but also said there was no rush. He does recommend doing procedures to achieve her ideal posture before puberty, if possible, to try to establish good posture before her weight distributes differently (I definitely support this). He says her hips seem fine, and as long as she is not letting pain get in the way of her doing things, waiting is fine. He says if she has to opt out of things she would like to do because of pain or endurance, that is when surgery should be strongly considered. He said osteotomies would probably be a better choice if needed as an adult. (I can stress enough how wonderful the docs were at Dupont; they always spoke to Elena, the patient, first; it's obvious they specialize in children, and it's refreshing and wonderful--our visit there was fantastic.)
So. It's now almost Fall, and Elena is in 5th grade. Currently she is not complaining of pain and she is moving better than a year ago (amazing!). We are still doing TherEx (but have slacked a little), she wears Dynasplints at night on both legs (still doesn't make it through the night, ~4 hours is average), and we've brought the stander home from school to use at home (we'll end up using it on average 5x/week, for about 30+ minutes at a time) at Elena's request. Extracurricular activities are PT, and hopefully one class (gymnastics, yoga, robotics, or art are all being considered). I'm going to start taken weekly pictures/walking vids to see if I see her posture/gait significantly declines. If so, we'll look at doing something before middle school.
This has been a stressful, rough ride for the past year. I was freaked out I'd miss a window to help her. The biggest lessons I've learned are 1) take a deep breath, and try to be patient; 2) give your physical therapist TIME and opportunity; 3) information is power, even though experts may not agree; 4) slow down and try to enjoy the moment. Easy to reflect on that after a long time...hopefully I'll remember this next time!
1. Elena had pretty bad knee pain. By "knee", I mean the area up/down/all encompassing her knee. Because of her high kneecaps (due to crouch gait--quads constantly pulling up on the patellas) sometimes it's hard for me to figure out if this is a muscle issue, connective tissue problem, or bone/alignment problem. My impression is the doctors didn't always know either.
We started with our main ortho, which assumed it was tendinitis. Elena got a new compression brace that was supposed to help retain her kneecap (a little; I don't think this really worked). It was hot to wear, but I think it alleviated pain mostly b/c it restricted her movement.
E complained of pain several times a week, ranging from pain level 2 to 7. I consider this extremely significant b/c I think she has a high threshold for pain, and decreased sensitivity due to her rhizotomy at age 4.
2. We finally figured out that her kneecaps were fractured. Same injury--most likely not from a fall, but from stress forces from crouch. Bones pulling apart, I imagine, is quite painful. I was angry an x-ray was not originally ordered (this was discovered during our third different ortho doctor visit). My impression is that this isn't terribly common, but it's not a huge surprise to doctors when this shows up on an x-ray. While it is upsetting...it's not worth fixing kneecaps unless you can help alleviate the cause of the fracture. Which means getting out of crouch.
3. NO DOCTORS AGREED. This was maddening. I am trying to make the best decision I can as a parent, but it's very stressful when you get conflicting recommendations from my best advisors.
So, here we are, nearly a year later. I have scheduled, then cancelled, two procedures for her. I finally got a consensus with the second ortho--which I initially felt good about his recommendation (tendon lengthening/knee capsule release) but I wanted to report why the other two procedures have been taken out for consideration.
Plan A: Do nothing. Ortho1 says E's knee pain "wasn't that bad" (I vehemently disagree). PT takes breaks to let E rest and try to minimize pain.
Plan B: Knee capsule release (cut to allow knee to fully straighten), tendon lengthening, possible hip flexor lengthening. Would be 6-8 weeks in full leg (not hip) casts. Ortho1 strongly discourages this idea.
Plan C: Ortho3 also discourages plan B. Recommends dual distal femoral osteotomies with patellar tendon shortening to bring down kneecaps. This plan involves much longer recovery (obviously). It is now springtime. PT introduces Therapy Exercise Program (TherEx), to work specific muscles to help postural strength. It's a lot of homework, but we do it. I am doubtful it will do more than keep the unsatisfactory status quo. E started seeing a massage therapist.
Plan D: Ortho1 changes mind and says yes something should be done to alleviate crouch. Recommends growth plate tethering in both legs (in essence, keeps the front of knees from growing while allowing the backs to grow--effectively "growing out of crouch". I worry about introducing a new bone deformity and look for someone to support this, as Ortho2 and Ortho3 do not).
It's been 2-3 months, and much to my surprise--Elena's crouch is lessening. I attribute this to the TherEx program, something I had close to zero confidence would do much of anything. Summer brings new challenges, more rest, more opportunities to stretch and move out of school. Elena's knee pain has lessened, her kneecaps are still high (I do not really expect this to change) but she is moving very well and hardly complains.
Last month we travel to Alfred I Dupont Nemours Children's Hospital, under a recommendation from our regular pediatrician (who doesn't know a lot about CP, but seems to know Elena better than her specialists). We see a developmental pediatrician and Ortho4. It's a lovely visit. Ortho4 disagrees with Plans C and D. He agreed with Ortho2 who said that the distal osteotomies wouldn't help her crouch, and there is a significant danger she would end up less mobile than now. He said that he has done several tethering procedures, and in his experience with CP kids like Elena, after a year (or so) when the plates are removed, there is a net zero gain--growth and spasticity don't mix well, and the tethering basically kept the crouch the same instead of getting worse after it was all over. He supported Plan B, almost identically (I didn't tell him what the other doctors had recommended). He was confident this would lessen her crouch, but also said there was no rush. He does recommend doing procedures to achieve her ideal posture before puberty, if possible, to try to establish good posture before her weight distributes differently (I definitely support this). He says her hips seem fine, and as long as she is not letting pain get in the way of her doing things, waiting is fine. He says if she has to opt out of things she would like to do because of pain or endurance, that is when surgery should be strongly considered. He said osteotomies would probably be a better choice if needed as an adult. (I can stress enough how wonderful the docs were at Dupont; they always spoke to Elena, the patient, first; it's obvious they specialize in children, and it's refreshing and wonderful--our visit there was fantastic.)
So. It's now almost Fall, and Elena is in 5th grade. Currently she is not complaining of pain and she is moving better than a year ago (amazing!). We are still doing TherEx (but have slacked a little), she wears Dynasplints at night on both legs (still doesn't make it through the night, ~4 hours is average), and we've brought the stander home from school to use at home (we'll end up using it on average 5x/week, for about 30+ minutes at a time) at Elena's request. Extracurricular activities are PT, and hopefully one class (gymnastics, yoga, robotics, or art are all being considered). I'm going to start taken weekly pictures/walking vids to see if I see her posture/gait significantly declines. If so, we'll look at doing something before middle school.
This has been a stressful, rough ride for the past year. I was freaked out I'd miss a window to help her. The biggest lessons I've learned are 1) take a deep breath, and try to be patient; 2) give your physical therapist TIME and opportunity; 3) information is power, even though experts may not agree; 4) slow down and try to enjoy the moment. Easy to reflect on that after a long time...hopefully I'll remember this next time!
Monday, February 23, 2015
Surgery Postponement
Oh my goodness I don't even know where to start.
I've postponed any surgeries for Elena. It's good, and bad, in many ways. I'll try to explain.
Over 8 months ago we started noticing Elena's crouch getting worse. I brought it up to her regular doctor, mentioning that her movements had become labored and her endurance/ability to carry had declined. He dismissed it as nothing. I was not pleased, but I didn't know what else to do. Our main PT suggested finding another doctor for a second opinion. I dragged my feet on this for lots of reasons.
At the beginning of fourth grade, her gait looked terrible--to me, anyway. Aside from occasional complaints of knee pain, Elena was happy. Fourth grade was (is?) challenging for her, but not as bad as last year. She is keeping up well academically and socially; physically she has different issues, but overall school has been very positive. Elena has been healthy and overall happy and rests well.
Then she started complaining of knee pain more often. Crying, sobbing, several times a week…so I started looking for other doctors. We went several times to her main ortho, hearing every time that "it's not that bad"and getting dismissed. That's when I started going to other doctors, driving myself crazy with ways to try to help change Elena's situation.
Then Elena decided to join the Drama club. Everyone supported this decision. She landed the lead in the school musical, and everyone made her strength/comfort a main focus to try to get through the final performance. She got a neoprene leg brace to attempt to deal with her ongoing tendinitis (just above her left knee-her main weight bearing leg), we cut her PT time in half, Elena started seeing a massage therapist, she got lots of rest and stretching. And we kept going to doctors.
Second Opinion (SO) basically said that it was time to do something. His recommendation was knee capsule release and slight lengthening of her medial hamstrings as well as ilipsoas; she would be in full leg casts for ~6 weeks, weight bearing immediately, then out of casts/rehab for another 6 weeks. I was upset my SO didn't agree at all with our main ortho. So I went to another doctor, recommended by SO.
A Gathering of Many PTs urged me to make sure doctors didn't touch her hips; her hip flexors may seem to have contractures, but they don't--she has good range, and they didn't think iliopsoas lengthening would help her get out of her crouch. They argued for a Therapy Exercise program specifically targeted to get her out of her crouch. I was (am) doubtful this would succeed-but agree that it would't hurt.
Third Opinion (TO) disagreed completely with hamstrings, recommended distal femoral osteotomies instead. I was so totally confused and upset--how can none of these doctors agree? TO's argument for osteotomies made sense to me, at least at the time.
I finally got Elena's gait lab report (that I couldn't read, as it wasn't formatted in a way I requested) and sent it to SO and TO, as well as a new set of E's hip x-rays. TO got back to me first, and conceded that her gait lab study indicated that she could be helped by hamstring lengthening OR the distal femoral osteotomies. I mentioned that I know when they do the osteotomies, frequently they bring down the kneecaps (patellar tendon advancement) at the same time and asked if we should consider this, as E has patella alta and tendinitis from the pulling on the kneecap. Doc said we'd have to do an x-ray to look at her knees; I said do it RIGHT NOW. So she did. Both of Elena's kneecaps are fractured from stress of crouch gait. (Docs suggest stress, not impact, due to nearly identical break--the right crouches worse than left, which is true and inferred by degree of fracture.)
I was crushed-my child is breaking her bones just trying to get around as best she can. I went ahead and scheduled the osteotomies and patellar tendon shortening (they don't do advancement on growing kids) so I could have her ready for summer break.
Then I got a call from SO, who warned me "absolutely do NOT do the osteotomies" and we talked for an hour why not. He said it wouldn't fix her crouch gait. Period. He said after examining her films and gait report (which his office returned my data disc, and printed out a report for me with his notes and recommendations) that he stands by his suggestion of lengthening surgery. He said the broken kneecaps are upsetting. It doesn't always happen but he has seen it before. He answered my question well about "when do you surgically intervene in a growing child?"--"When there is pain, and/or when there is a decline in function". We definitely have both.
I got in touch with some families I know whose children had broken legs; I found that rehab (in typically developing children) is closer to a year than 6 months, as I had originally thought.
So.
I decided to postpone (indefinitely?) the osteotomy surgery. I immediately felt better about it. I was upset with myself--if it felt that wrong, why did I schedule it? Was it desperation? I never want to make a decision out of desperation. My first reason was she wouldn't be better by summertime; that was the main reason to do it at the end of February--after the play, ready for summer. Since that wasn't going to happen, the procedure was cancelled. I feel like others were hinting at me against the osteotomies--therapists, blog readers--but I wasn't listening. I wasn't open-minded enough? I needed more than a hint? I don't know. It's a lesson I'm glad I have the chance to learn. I feel like I am patient, but maybe not enough? I don't know.
I decided to give the PTs a chance. It can't hurt, and if decide to go with surgery it's better if she's stronger before any operation. I asked Theresa how long it would take to see results, assuming that Elena could do her exercise regimen; she said three months. This would end our exercise regimen too close to summer break to opt for surgical intervention afterwards, so I told Theresa I'd give her six months (until the end of summer). If Elena could do it. If her pain is too much, we opt for surgery (most likely with the hamstring lengthening with SO).
There is also a clinical trial we might be involved in (more on that later) and some possible changes in bracing. Onward!
I've postponed any surgeries for Elena. It's good, and bad, in many ways. I'll try to explain.
Over 8 months ago we started noticing Elena's crouch getting worse. I brought it up to her regular doctor, mentioning that her movements had become labored and her endurance/ability to carry had declined. He dismissed it as nothing. I was not pleased, but I didn't know what else to do. Our main PT suggested finding another doctor for a second opinion. I dragged my feet on this for lots of reasons.
At the beginning of fourth grade, her gait looked terrible--to me, anyway. Aside from occasional complaints of knee pain, Elena was happy. Fourth grade was (is?) challenging for her, but not as bad as last year. She is keeping up well academically and socially; physically she has different issues, but overall school has been very positive. Elena has been healthy and overall happy and rests well.
Then she started complaining of knee pain more often. Crying, sobbing, several times a week…so I started looking for other doctors. We went several times to her main ortho, hearing every time that "it's not that bad"and getting dismissed. That's when I started going to other doctors, driving myself crazy with ways to try to help change Elena's situation.
Then Elena decided to join the Drama club. Everyone supported this decision. She landed the lead in the school musical, and everyone made her strength/comfort a main focus to try to get through the final performance. She got a neoprene leg brace to attempt to deal with her ongoing tendinitis (just above her left knee-her main weight bearing leg), we cut her PT time in half, Elena started seeing a massage therapist, she got lots of rest and stretching. And we kept going to doctors.
Second Opinion (SO) basically said that it was time to do something. His recommendation was knee capsule release and slight lengthening of her medial hamstrings as well as ilipsoas; she would be in full leg casts for ~6 weeks, weight bearing immediately, then out of casts/rehab for another 6 weeks. I was upset my SO didn't agree at all with our main ortho. So I went to another doctor, recommended by SO.
A Gathering of Many PTs urged me to make sure doctors didn't touch her hips; her hip flexors may seem to have contractures, but they don't--she has good range, and they didn't think iliopsoas lengthening would help her get out of her crouch. They argued for a Therapy Exercise program specifically targeted to get her out of her crouch. I was (am) doubtful this would succeed-but agree that it would't hurt.
Third Opinion (TO) disagreed completely with hamstrings, recommended distal femoral osteotomies instead. I was so totally confused and upset--how can none of these doctors agree? TO's argument for osteotomies made sense to me, at least at the time.
I finally got Elena's gait lab report (that I couldn't read, as it wasn't formatted in a way I requested) and sent it to SO and TO, as well as a new set of E's hip x-rays. TO got back to me first, and conceded that her gait lab study indicated that she could be helped by hamstring lengthening OR the distal femoral osteotomies. I mentioned that I know when they do the osteotomies, frequently they bring down the kneecaps (patellar tendon advancement) at the same time and asked if we should consider this, as E has patella alta and tendinitis from the pulling on the kneecap. Doc said we'd have to do an x-ray to look at her knees; I said do it RIGHT NOW. So she did. Both of Elena's kneecaps are fractured from stress of crouch gait. (Docs suggest stress, not impact, due to nearly identical break--the right crouches worse than left, which is true and inferred by degree of fracture.)
 |
| Left Knee. Fracture is close to cap |
 |
| Right Knee. Fracture is separate from cap |
I was crushed-my child is breaking her bones just trying to get around as best she can. I went ahead and scheduled the osteotomies and patellar tendon shortening (they don't do advancement on growing kids) so I could have her ready for summer break.
Then I got a call from SO, who warned me "absolutely do NOT do the osteotomies" and we talked for an hour why not. He said it wouldn't fix her crouch gait. Period. He said after examining her films and gait report (which his office returned my data disc, and printed out a report for me with his notes and recommendations) that he stands by his suggestion of lengthening surgery. He said the broken kneecaps are upsetting. It doesn't always happen but he has seen it before. He answered my question well about "when do you surgically intervene in a growing child?"--"When there is pain, and/or when there is a decline in function". We definitely have both.
I got in touch with some families I know whose children had broken legs; I found that rehab (in typically developing children) is closer to a year than 6 months, as I had originally thought.
So.
I decided to postpone (indefinitely?) the osteotomy surgery. I immediately felt better about it. I was upset with myself--if it felt that wrong, why did I schedule it? Was it desperation? I never want to make a decision out of desperation. My first reason was she wouldn't be better by summertime; that was the main reason to do it at the end of February--after the play, ready for summer. Since that wasn't going to happen, the procedure was cancelled. I feel like others were hinting at me against the osteotomies--therapists, blog readers--but I wasn't listening. I wasn't open-minded enough? I needed more than a hint? I don't know. It's a lesson I'm glad I have the chance to learn. I feel like I am patient, but maybe not enough? I don't know.
I decided to give the PTs a chance. It can't hurt, and if decide to go with surgery it's better if she's stronger before any operation. I asked Theresa how long it would take to see results, assuming that Elena could do her exercise regimen; she said three months. This would end our exercise regimen too close to summer break to opt for surgical intervention afterwards, so I told Theresa I'd give her six months (until the end of summer). If Elena could do it. If her pain is too much, we opt for surgery (most likely with the hamstring lengthening with SO).
There is also a clinical trial we might be involved in (more on that later) and some possible changes in bracing. Onward!
Friday, January 16, 2015
Surgery Decision, Mostly Made
After three different doctor visits, a lot of time thinking and gathering information, I think a decision has been made (pending a few phone calls).
We are going with a different orthopaedic doctor. She recommends a distal femoral osteotomy, in both legs. If this is the only procedure, Elena won't have to wear casts--just braces that we can remove if needed (bathing, etc.). She may have something done with her patellar tendons; I'm not sure yet. If she does, she'll need to be in casts for 6-8 weeks.
That's the short version, anyway. Her hips are fine (shallow, but fine). The distal (femur end near the knee instead of the hip) osteotomy makes sense to me, given her femoral ante version and how badly her knees are angled toward her center line. If this helps her posture/gait, which is the intent and which the doctor believes it will, less pressure should be on her knees/ankles/big toes, which should help alleviate (or at minimum, not worsen) her issues related to her crouch.
The majority of stories I read related to surgery regret seem to focus on procedures involving the hips. Has anyone had a distal femoral osteotomy (not involving hips) out there? What was your experience? Are you glad you did it? How was recovery?
The procedure, as far as I understand it, is relatively simple and the cut site gets some sort of "cap" on the bone, which is supposed to make the overall process (including recovery) quick. This doctor believes that changing the bony structure is a better way to help crouch gait than lengthening tendons. I'm not sure I believe this, but regardless--I do think that in Elena's case, the osteotomies should yield good results.
I look forward to any and all comments.
Friday, December 19, 2014
Surgical Consultation Recap (ongoing)
Things have been busy here. Overall, things are wonderful, with the exception of Elena's gait/crouch. So, we've had a few appointments to gather information. Warning, it's long.
I made an appointment with another orthopedist, recommended from a friend. So, we took the day off school and headed to Richmond to see Dr. Chester Sharps. Long story short; I like him, he's very personable. Our meeting got pushed late (we had 2 other appointments that day, and we were the last appointment of his day), and while I wasn't upset at him, my patience had run out and I didn't present myself the way I had intended. Basically, I wanted to say to him "So, what do you think?" and instead, all my frustrations with her current doctor came pouring out, and then we talked options. Here's the options recap.
Elena has 9 problem areas (if you are going to address "all"), assuming her hips were fine (her last x-ray indicated they were, I found out later that x-ray isn't current enough). From the hips down, they are: 1) hip flexor (iliopsoas) tightness/contracture, 2) adductor tightness (not terrible, though), 3) hamstring contracture (multiple, forgot the actual names), 4) patella alta (high kneecap, both sides), 5) knee capsule contracture (don't remember the name; basically her knee is caught in a contracture so it can't straighten), 6) femoral and 7) tibial anteversion, 8) severe pronation mid foot (rocker foot), and 9) bunion (initial formation of) on her left toe.
I was a little shocked at the list. That wasn't really my question, so I had him remove any area from the list that wasn't really a problem with her movement. I want to improve her "ease of movement", not have her just stand straight. He removed any osteotomies from the list, stating that her anteversion didn't seem to affect the way she moved very much. I asked if it would get worse, he didn't seem to think so.
We both agreed that the best course of action to protect her joints and have her move better is to get out of the crouch. To do that, Sharps stated that one needs to approach it from two points: hips and hamstrings. If you lengthen hamstrings, you still have hip contractures, so you bend over at the hips. If you lengthen hips, you can straighten from the thighs-up but are still bent at the knee. This sound logical to me, but most docs don't touch iliopsoas b/c I guess they figure they are easier to stretch/small to operate on? Not sure. Sharps also noted that b/c E's knee is in a state where it can't be straightened, he'd do a knee capsulectomy (cutting the knee capsule)--basically making a cut so the capsule can be extended. Because of the knee procedure, Elena would have to be casted above and below the knee to ensure stability and proper healing, for 6-8 weeks. She could be weight bearing (think walk-like-a-penguin, which she can do a little).
Am I excited about that? Not really. When I look at a good time frame, it would have to be after the play (mid-February), still in the cold months (b/c otherwise casts would be too hot), ideally during school (she needs the distraction), and out to enjoy warmer weather and swimming/beach.
The logical time frame is right after the play. She'd be out of her casts by her birthday.
I still wasn't sold, so I went to her regular ortho doc. He's not a friendly guy, but I think we have a good professional relationship, and he's known her since she was 8 months old.
He saw her walk 10 feet with her crutches. E was petrified of him, and she stood much taller than usual, not an accurate picture at all. He said "Do nothing. She's not that bad."
Now, I'd agree with him if Elena gave him an accurate walking example. Or if he watched her move for more than three minutes. Or if she wasn't crying from knee pain two times a week. Or if her endurance was better--it's one quarter of what it was this time last year, and she's hasn't grown much. Or if she was safe at home--she's started falling, including once down the steps. Or if she could still carry something. How is this picture not that bad???
We have tried almost everything we can think of. Botox is out--it doesn't work anymore, and it doesn't do much in the first place; she gets daily stander time (in school and home), PT (in school and private), we stretch her every night. She wears a night brace. She wears a daily compression brace to try to alleviate tendinitis pain. We see a massage therapist. She sinks into her crouch and relies on her hands to try to keep herself from falling. She is exhausted from just trying to move. This is NOT the way it used to be.
*sigh* If I've learned anything from these consultations, it's that I made a gross misjudgment with our regular orthopedic doctor. I assumed that since we've been seeing him since E was a baby, he'd know her better. I thought he'd kind of know her trajectory, know what to expect, based on where she'd been.
THAT'S WRONG. Doctors see all kinds of patients every day.
He doesn't remember us, he sees us maybe three times a year. It's a snapshot.
Which makes me wonder why I put so much weight into his opinion, when one of his colleagues recommends something completely different.
I am trying to keep an open mind, but it's difficult. As far as something noninvasive, no Botox. PERCS could be fine for hamstrings/hips (that's basically what they'd do anyway), but it won't help her knee capsule. I've heard of alcohol/phenol block, but again, that won't help the knee.
Of course I get the fact that no one wants her to get worse, given the potential with surgery and scar tissue or something going wrong (remember, no bony stuff here, just soft tissue). And I know very little of knee surgeries--my guess (?) is it's relatively minor, just to give space, not like reattaching the achilles or something. But if I do nothing she still gets worse. Her crouch is a negative feedback loop--sink, less stability, causes pain, sink more.
I assume that if she gets out of her crouch, she will have better ease of movement. Am I mistaken? Anyone have experience with this surgery--not osteotomies--to get out of a crouch position?
She was in a good place for the past 5 years. So, I guess that means we were doing a decent job of keeping her stretched and moving until her growth (?) or daily expectations (school, home, responsibilities, etc.) increased to the point where she needs more than what we are currently providing.
Anyone want to weigh in here? I appreciate your comments.
I made an appointment with another orthopedist, recommended from a friend. So, we took the day off school and headed to Richmond to see Dr. Chester Sharps. Long story short; I like him, he's very personable. Our meeting got pushed late (we had 2 other appointments that day, and we were the last appointment of his day), and while I wasn't upset at him, my patience had run out and I didn't present myself the way I had intended. Basically, I wanted to say to him "So, what do you think?" and instead, all my frustrations with her current doctor came pouring out, and then we talked options. Here's the options recap.
Elena has 9 problem areas (if you are going to address "all"), assuming her hips were fine (her last x-ray indicated they were, I found out later that x-ray isn't current enough). From the hips down, they are: 1) hip flexor (iliopsoas) tightness/contracture, 2) adductor tightness (not terrible, though), 3) hamstring contracture (multiple, forgot the actual names), 4) patella alta (high kneecap, both sides), 5) knee capsule contracture (don't remember the name; basically her knee is caught in a contracture so it can't straighten), 6) femoral and 7) tibial anteversion, 8) severe pronation mid foot (rocker foot), and 9) bunion (initial formation of) on her left toe.
I was a little shocked at the list. That wasn't really my question, so I had him remove any area from the list that wasn't really a problem with her movement. I want to improve her "ease of movement", not have her just stand straight. He removed any osteotomies from the list, stating that her anteversion didn't seem to affect the way she moved very much. I asked if it would get worse, he didn't seem to think so.
We both agreed that the best course of action to protect her joints and have her move better is to get out of the crouch. To do that, Sharps stated that one needs to approach it from two points: hips and hamstrings. If you lengthen hamstrings, you still have hip contractures, so you bend over at the hips. If you lengthen hips, you can straighten from the thighs-up but are still bent at the knee. This sound logical to me, but most docs don't touch iliopsoas b/c I guess they figure they are easier to stretch/small to operate on? Not sure. Sharps also noted that b/c E's knee is in a state where it can't be straightened, he'd do a knee capsulectomy (cutting the knee capsule)--basically making a cut so the capsule can be extended. Because of the knee procedure, Elena would have to be casted above and below the knee to ensure stability and proper healing, for 6-8 weeks. She could be weight bearing (think walk-like-a-penguin, which she can do a little).
Am I excited about that? Not really. When I look at a good time frame, it would have to be after the play (mid-February), still in the cold months (b/c otherwise casts would be too hot), ideally during school (she needs the distraction), and out to enjoy warmer weather and swimming/beach.
The logical time frame is right after the play. She'd be out of her casts by her birthday.
I still wasn't sold, so I went to her regular ortho doc. He's not a friendly guy, but I think we have a good professional relationship, and he's known her since she was 8 months old.
He saw her walk 10 feet with her crutches. E was petrified of him, and she stood much taller than usual, not an accurate picture at all. He said "Do nothing. She's not that bad."
Now, I'd agree with him if Elena gave him an accurate walking example. Or if he watched her move for more than three minutes. Or if she wasn't crying from knee pain two times a week. Or if her endurance was better--it's one quarter of what it was this time last year, and she's hasn't grown much. Or if she was safe at home--she's started falling, including once down the steps. Or if she could still carry something. How is this picture not that bad???
We have tried almost everything we can think of. Botox is out--it doesn't work anymore, and it doesn't do much in the first place; she gets daily stander time (in school and home), PT (in school and private), we stretch her every night. She wears a night brace. She wears a daily compression brace to try to alleviate tendinitis pain. We see a massage therapist. She sinks into her crouch and relies on her hands to try to keep herself from falling. She is exhausted from just trying to move. This is NOT the way it used to be.
*sigh* If I've learned anything from these consultations, it's that I made a gross misjudgment with our regular orthopedic doctor. I assumed that since we've been seeing him since E was a baby, he'd know her better. I thought he'd kind of know her trajectory, know what to expect, based on where she'd been.
THAT'S WRONG. Doctors see all kinds of patients every day.
He doesn't remember us, he sees us maybe three times a year. It's a snapshot.
Which makes me wonder why I put so much weight into his opinion, when one of his colleagues recommends something completely different.
I am trying to keep an open mind, but it's difficult. As far as something noninvasive, no Botox. PERCS could be fine for hamstrings/hips (that's basically what they'd do anyway), but it won't help her knee capsule. I've heard of alcohol/phenol block, but again, that won't help the knee.
Of course I get the fact that no one wants her to get worse, given the potential with surgery and scar tissue or something going wrong (remember, no bony stuff here, just soft tissue). And I know very little of knee surgeries--my guess (?) is it's relatively minor, just to give space, not like reattaching the achilles or something. But if I do nothing she still gets worse. Her crouch is a negative feedback loop--sink, less stability, causes pain, sink more.
I assume that if she gets out of her crouch, she will have better ease of movement. Am I mistaken? Anyone have experience with this surgery--not osteotomies--to get out of a crouch position?
She was in a good place for the past 5 years. So, I guess that means we were doing a decent job of keeping her stretched and moving until her growth (?) or daily expectations (school, home, responsibilities, etc.) increased to the point where she needs more than what we are currently providing.
Anyone want to weigh in here? I appreciate your comments.
Thursday, October 30, 2014
Help! Multi-level surgery to help crouch gait
Hi Doodlers in blogland,
I've been thinking about Elena's worsening gait. Most days, it's bad. Feet splayed out, dragging, slow. There is a helplessness creeping up in her. So it's time.
We have two orthopaedic visits this month (different docs--time for second/third opinions), where I plan on discussing surgical options. I'm thinking way ahead here to the classic multi-level approach (hamstring lengthenings, femoral osteotomies, possible hip osteotomy, etc.). This is the worse-case scenerio, I think.
How bad is it? Anyone with experience out there? I am not necessarily pro-multiple surgeries, but I want to arm myself with information. Pros/cons?
I am also considering things like PERCS (everyone can pipe down about NJ's Dr. Nuzzo. I'm not counting him out, I just have a very difficult time believing 100% success rate with no follow-up from his patients).
I am also tentative. I think surgery is the right call, but I'm not sure which kind, or when, and how long between this and whatever is next. I plan on having Elena weigh in here too. She is scared to death of surgery (I think she'll be relieved once a procedure is over, and she'll remember it's not that bad) but I want her to have understanding of why, when, and have her agree that whatever we do (or don't do) is the best for her body.
I am particularly interested in those who have had femoral/hip osteotomies prior to puberty and then how that worked out during/afterwards. I need data!
Please comment. I value your experiences. And as always, thank you for reading!
I've been thinking about Elena's worsening gait. Most days, it's bad. Feet splayed out, dragging, slow. There is a helplessness creeping up in her. So it's time.
We have two orthopaedic visits this month (different docs--time for second/third opinions), where I plan on discussing surgical options. I'm thinking way ahead here to the classic multi-level approach (hamstring lengthenings, femoral osteotomies, possible hip osteotomy, etc.). This is the worse-case scenerio, I think.
How bad is it? Anyone with experience out there? I am not necessarily pro-multiple surgeries, but I want to arm myself with information. Pros/cons?
I am also considering things like PERCS (everyone can pipe down about NJ's Dr. Nuzzo. I'm not counting him out, I just have a very difficult time believing 100% success rate with no follow-up from his patients).
I am also tentative. I think surgery is the right call, but I'm not sure which kind, or when, and how long between this and whatever is next. I plan on having Elena weigh in here too. She is scared to death of surgery (I think she'll be relieved once a procedure is over, and she'll remember it's not that bad) but I want her to have understanding of why, when, and have her agree that whatever we do (or don't do) is the best for her body.
I am particularly interested in those who have had femoral/hip osteotomies prior to puberty and then how that worked out during/afterwards. I need data!
Please comment. I value your experiences. And as always, thank you for reading!
Friday, December 10, 2010
Casts Off!
E got her casts off today!
In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.
Here's a video a half hour before casts are removed:
Waiting for the saw
Ta-Da!!
INCISIONS
After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.
E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!
Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.
Walking
Slalom Walking (WOW!)
Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)
And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!
I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!
In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.
Here's a video a half hour before casts are removed:
Waiting for the saw
Ta-Da!!
INCISIONS
After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.
E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!
Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.
Walking
Slalom Walking (WOW!)
Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)
And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!
I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!
Sunday, December 5, 2010
Don't worry Mom...I got this
Well, E's had her casts on for over two weeks--and she's doing awesome. She hardly complains about them, even though I know they are not comfortable. She's using her crutches now, and cruising around the house (ADD VID HERE). She's also taking some independent steps across the room.
She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.
And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.
"Mom, you take Vivian. I got this."
She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!
This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.
She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.
And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.
"Mom, you take Vivian. I got this."
She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!
This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.
Monday, November 22, 2010
Post-Op: Day 2, 3
Day 2:
E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.
E got Tylenol, then took a nap.
E can sit in almost any position, to color or play, for a long time now.
She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.
Day 3:
E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.
We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.
She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).
E has been on Valium 2x day; one dose in the morning, one dose before bed. She has been sleeping well. This early afternoon we went on a stroller ride to investigate Santa at the Omni Hotel. E was excited! The trip lasted about 2.5 hours; E (and Vivian) started melting down before we left. Both were tired; I think E was a little sore.
E got Tylenol, then took a nap.
E can sit in almost any position, to color or play, for a long time now.
She crawled a little, and we can carry her normally now (hands below her rear instead of "cradle" carry). Passive range of motion exercises show she can easily extend her legs, nearly fully, without pain with her ankles flexed in her casts.
Day 3:
E is crawling and can get into a sitting position on a low stool by herself--this requires some weight bearing on her feet, but she's doing it on the "toes" of her casts and strong-arming the rest on a nearby surface. I can undress her for toileting by resting her feet ever so slightly on the floor while she holds on to my neck (she is holding most of her weight off the floor). E tolerated some ball exercises (small circles while she was sitting on the ball, hands either to the sides or not holding on at all). She can do her own range of motion movements (while lying down, bring knee to chest, then back down with her leg straight on the floor) but her control going "down" is poor (I hold her leg so she won't "bang it" on the ground). She can do full bridges with her pelvis, which also requires weight bearing on the heels in her casts.
We tried partial standing; she was nervous to put any weight on her right leg. She can be placed in a half-kneel position on either leg, without pain, but I haven't had her get in that position independently.
She is still sleeping in bed with me, b/c she has trouble repositioning herself during the night, but only b/c the pillow between her legs is too big for her to move. I am hesitant to put her in her own bed until I know she can get out of bed (bear weight on her feet enough to get to the ground slowly) safely. The "sleeping with a parent" issue is a big one for us, b/c we've had sleep issues for a while and *just recently* (pre-surgery) were making such excellent progress. E is very rational regarding her sleep arrangement--she knows as soon as she's more able, she'll be in her own bed. She seems to be very calm about this (we'll see what actually happens!!).
Saturday, November 20, 2010
Post-Op: Day 1
Day 1.
E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.
I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.
She slept all night.
E is well rested, and all kinds of talking and laughing. She does not like her legs to be straightened. My goal was to try to have her sit in a chair and play today, and see if she could be carried more traditionally (upright, with my hands under her rear, with her arms around my neck) rather than a basket carry (her neck and back and her knees held up by my arms with her folded inbetween). Both of these were successful, although E preferred the basket (or "cradle") carry. She was also able to sit up, with her knees supported by a cushion underneath, and watch TV. We colored a lot, and she ate well. Well, a lot of popsicles, anyway.
I even got to do a "dry run bath" where I propped her on the floor, with her feet up, and pretended I was washing her--to see how much pressure I could put on her legs, to see if I could turn her hips, and test her passive range of motion. Even sore, I could tell that she could keep her legs straighter than before the surgery.
She slept all night.
Pre-Op
We had a motto for today:
E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.
She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)
An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:
WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.
I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.
Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.
Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.
She slept all night the first night.
Overall, A LOT EASIER than I expected.
"Let's Do This."
E was ready. We brought her favorite buddy, Mr. Pink, with us--he was having a procedure too.
She was fine up until the anesthesiologist carried her away. She thought I might go with her to the procedure room, but that isn't customary, and it was never really talked about. I'm sure she cried, but I never heard it. My heart broke just a little when I saw my brave girl go through the double doors, but I honestly believe this is a very good decision. My nerves were okay; this procedure didn't freak me out hardly at all--SDR sure did, though. Everything after that seems to be a cakewalk. ;)
An hour and a half later, I got called in to the recovery room. I was a little surprised; I didn't expect E to be crying so much. She was in a stupor, given her sedation; I also know from previous experience, she has a hard time with feeling woozy. She whined and cried constantly that her throat hurt (intubation during surgery), and her feet hurt to move. She had prickmarks down the back of her yellow-stained legs (from percutaneous lengthening of the hamstrings), and her feet were casted in a 90 degree angle at the ankle (after traditional lengthening of the gastrocs), encased in hot pink. The nurse gave her some morphine and fentanyl; she quieted down. She also gave her an oxygen tube, which she taped to blow gently in her face (oxygen saturation drops after patients get morphine). After a minute or two, E's eyes popped open. She grabbed the tube. She finally spoke something intelligible:
"That thing is annoying."
WELL, if there was any doubt I'd see my typically E that afternoon, not anymore.
I worried how I would get her home, given her pain; she had to ride in a carseat to get home, and I had to move her several times. She never once complained. I think she just wanted to get home.
Once there, we propped her on the couch and put a pillow under her knees. She rested; we watched some movies, but mainly I gave her liquids as tolerated and rubbed her stomach. Using the bathroom was difficult, as it was a two-person job. Annette and I traded duties with the kids--one of the priorities was making sure squirmy Vivian didn't crawl all over E. I gave Elena tylenol+codeine--which she'd had trouble with in the past--and after one bout of vomiting, we gave up on it. She tolerates Valium, so she's on that every 8-10 hours as needed.
Later in the evening, she was ravenous; she hadn't eaten anything all day. After inhaling pizza (I didn't think that was a good idea, but oh well), fritos, pretzels, and a bunch of other things, she seemed more herself.
She slept all night the first night.
Overall, A LOT EASIER than I expected.
Monday, November 15, 2010
A little anxious...Surgery is THURSDAY
Elena is having a tendon lengthening procedure in three days.
We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.
SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.
Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.
My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.
We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.
We knew this was coming-- I guess with kids with SDCP, it's more of a "when" than an "if" type of situation. I understand parents' and therapists' opinions about not wanting invasive procedures done...but I feel incredibly strong that her quality of movement cannot be addressed with different types of "stretching" therapy.
SDR was a great choice for us. I still feel that way--E's spasticity has decreased tremendously. That has been a life-changer. But living with spasticity like she did for the first four years of her life made its mark--her calf muscles/achilles tendon are short, and her hamstrings as well. She has femoral and tibial inversion (CONFIRM THIS IS THE RIGHT NAME), where her bones have twisted--it's not bad enough to warrant a surgery for this right away (hopefully ever), but more proper weight-bearing will only help her structure--and should be done before age 9. She also has almost a "rocker foot", where the bones in the arch of her feet have broken down due to improper weight bearing (on the midfoot, as opposed to the heel), and this will eventually cause pain.
Elena will have percutaneous lengthening of the hamstrings (both sides, more on the right) and standard lengthening of the calf (exact location HERE) consisting of approx. 2 cm incision on each leg. She'll be casted below the knee ("walking" casts) for three weeks.
My expectations are that Elena will be able to stand up tall (after regaining her strength), hopefully with her weight evenly distributed on her feet (as opposed to her toes) and have a better foundation for balance.
We have several Feldenkrais sessions booked, to ease E into a new movement pattern during and after casting; we'll also continue her "normal" schedule as best we can (school, PT, scouts, Jimmy Time--unfortunately hippotherapy and yoga classes end this month) with a lot of holiday activity in the mix. An added PT session/week (CME) will hopefully happen early 2011.
Sunday, April 18, 2010
Next Up: Surgery, most likely PERCS
I am pretty sure E needs tendon lengthening. She has a very hard time standing fully upright; I think she could do so more easily if she had her contractures surgically lengthened.
I've been thinking about this for a long while, and I think PERCS (Selective Percutaneous Myofascial Lengthening) is the way to go. Our orthopaedic agrees, which sort of surprised me...I thought he'd want to go the traditional lengthening route. Now I need to find the time and doctor. I am pursuing Roy Nuzzo in NJ.
I've been thinking about this for a long while, and I think PERCS (Selective Percutaneous Myofascial Lengthening) is the way to go. Our orthopaedic agrees, which sort of surprised me...I thought he'd want to go the traditional lengthening route. Now I need to find the time and doctor. I am pursuing Roy Nuzzo in NJ.
Wednesday, February 25, 2009
Surprises at Home
Yesterday was Elena's first full day at home. She slept better last night than in the hospital, but she has separation anxiety from Jason, as he was on night duty at the hospital. I'm sure that will get better. It sure makes tired parents. Thank God we have Annette.
When I got home from work (early early shift--YUCK) I put Elena's AFOs on for the first time (with her shoes also). I'll post a pic later today. She didn't fight, squirm, or complain when I put them on. I do think wearing them gives her more confidence. I also think they feel rather heavy on her feet. I just had her wear them on our trip to the library, where she was in her stroller the whole time.
She wore them until we took them off after lunch, so maybe 2 hours. No complaints.
After E woke up from her nap, we did standing drills. She was less resistant to putting her heels down, and even helped stand up out of her chair, bearing weight on her hands and feet to do so. We did drills for 20 minutes while we played Littlest Pet Shop.
Before dinner, she threw a football all around the first floor and crawled to chase it. She didn't complain about her sitting (w-sit) or crawling, she was too busy laughing the whole time.
Later on that day, Elena wanted to do her treadmill. We put her shoes on again. While we were waiting, she stood up out of her chair, holding onto her dresser with one hand, and then started cruising along the dresser--for a few steps, then she looked at me like she was uncomfortable. I sat her down again after that for a few minutes. She took about 5 steps on the treadmill (with Jason holding most of her weight) and then said she was finished.
I certainly didn't expect her to stand up today or cruise at all on her own. YAY!
When I got home from work (early early shift--YUCK) I put Elena's AFOs on for the first time (with her shoes also). I'll post a pic later today. She didn't fight, squirm, or complain when I put them on. I do think wearing them gives her more confidence. I also think they feel rather heavy on her feet. I just had her wear them on our trip to the library, where she was in her stroller the whole time.
She wore them until we took them off after lunch, so maybe 2 hours. No complaints.
After E woke up from her nap, we did standing drills. She was less resistant to putting her heels down, and even helped stand up out of her chair, bearing weight on her hands and feet to do so. We did drills for 20 minutes while we played Littlest Pet Shop.
Before dinner, she threw a football all around the first floor and crawled to chase it. She didn't complain about her sitting (w-sit) or crawling, she was too busy laughing the whole time.
Later on that day, Elena wanted to do her treadmill. We put her shoes on again. While we were waiting, she stood up out of her chair, holding onto her dresser with one hand, and then started cruising along the dresser--for a few steps, then she looked at me like she was uncomfortable. I sat her down again after that for a few minutes. She took about 5 steps on the treadmill (with Jason holding most of her weight) and then said she was finished.
I certainly didn't expect her to stand up today or cruise at all on her own. YAY!
Monday, February 23, 2009
Day 5
Day 5 post-op--or should I say, DISCHARGE DAY!
Elena was in pretty good spirits today. The morning was spent calming her down between doctor visits, removal of IVs/tubes, filling out discharge information and getting Elena to eat. The hospital preschool teacher came by for a visit to ask if E wanted to go to school; she said yes. I sent her there with Grandma b/c I was expecting another doctor visit before discharge.
About 20 minutes later, my mom came in huffing and puffing asking me if it was alright for Elena to be moving around. I said, "clarify moving around".
"Oh, you know, crawling around, sitting up, reading books--is that okay?"
I bolted.
Sure enough--there she was, sitting up on the floor getting a book. She was a little shaky with balance, sort of like a newborn kitten moving around. She was having a great time in the preschool.
After school, we said good-bye to the nurses and strolled out. She was VERY happy to be going home!
Priorities were 1) BATH, 2) lunch, 3) NAP. But first she insisted on taking care of her baby sister, giving her a good rock before getting to business.
She also crawled a little--head up, tabletop, with reciprocal leg motion. Not a great pic, but here's what I have.
She can sit in a "w" sit but she really leans back. She also knows when she w-sits, we always ask her to "fix her feet", meaning try to taylor sit or side-sit. She always does it with her left foot (first), b/c that's the easiest leg to move around for her. It took her a while, she was almost studying herself as she moved, but she got to a side-sit with her left leg. I asked her if she wanted to fix her right foot and she tried and fell backwards (but laughed about it). She asked me to help her, so I tried, but she didn't seem comfortable, so I just let her play sitting however she wanted.
Later in the day, she sat on her "office" bench (bench without a back). She sat up and played with both hands. Sometimes she leaned so far back I thought she would fall, but she caught herself. We also played beans by her Bean Box. She sat in a chair with a back and arms; she normally leans over to play in the beans but I think this movement is painful. So I put a bunch of beans on the top of the box and that seemed to be good for now.
She did some standing drills, and we even "walked" on our treadmill before going to bed (we held her up, no shoes, and she lightly placed her toes on the platform and took maybe 5 steps before she said she was finished).
AMAZING. We are so thankful for everyone...our therapists, doctors, nurses, teachers, aides, friends, neighbors, and everyone just sending us good thoughts. Jason and I are dog tired. And NOW the hard part begins, right?
Elena was in pretty good spirits today. The morning was spent calming her down between doctor visits, removal of IVs/tubes, filling out discharge information and getting Elena to eat. The hospital preschool teacher came by for a visit to ask if E wanted to go to school; she said yes. I sent her there with Grandma b/c I was expecting another doctor visit before discharge.
About 20 minutes later, my mom came in huffing and puffing asking me if it was alright for Elena to be moving around. I said, "clarify moving around".
"Oh, you know, crawling around, sitting up, reading books--is that okay?"
I bolted.
Sure enough--there she was, sitting up on the floor getting a book. She was a little shaky with balance, sort of like a newborn kitten moving around. She was having a great time in the preschool.
After school, we said good-bye to the nurses and strolled out. She was VERY happy to be going home!
Priorities were 1) BATH, 2) lunch, 3) NAP. But first she insisted on taking care of her baby sister, giving her a good rock before getting to business.
She also crawled a little--head up, tabletop, with reciprocal leg motion. Not a great pic, but here's what I have.
She can sit in a "w" sit but she really leans back. She also knows when she w-sits, we always ask her to "fix her feet", meaning try to taylor sit or side-sit. She always does it with her left foot (first), b/c that's the easiest leg to move around for her. It took her a while, she was almost studying herself as she moved, but she got to a side-sit with her left leg. I asked her if she wanted to fix her right foot and she tried and fell backwards (but laughed about it). She asked me to help her, so I tried, but she didn't seem comfortable, so I just let her play sitting however she wanted.
Later in the day, she sat on her "office" bench (bench without a back). She sat up and played with both hands. Sometimes she leaned so far back I thought she would fall, but she caught herself. We also played beans by her Bean Box. She sat in a chair with a back and arms; she normally leans over to play in the beans but I think this movement is painful. So I put a bunch of beans on the top of the box and that seemed to be good for now.
She did some standing drills, and we even "walked" on our treadmill before going to bed (we held her up, no shoes, and she lightly placed her toes on the platform and took maybe 5 steps before she said she was finished).
AMAZING. We are so thankful for everyone...our therapists, doctors, nurses, teachers, aides, friends, neighbors, and everyone just sending us good thoughts. Jason and I are dog tired. And NOW the hard part begins, right?
Sunday, February 22, 2009
Day 4
Today was fantastic! First of all, Elena slept for the first night since her surgery. BIG DIFFERENCE. She also continued to eat relatively well, with no nausea issues. Overall her mood has been good.
The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).
We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.
Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).
She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.
For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!
The main goals today were to 1) get her to eat more, 2) do some PT (PROM, standing drills) and work on her confidence (having fun). She didn't really eat well until lunchtime, but that was alright. We did 2 major PT sessions, (a 2-person job). She did get her heels almost down at each session--the second session was later in the day, without a nap--and we did standing drills for over 10 minutes! The drill involved throwing a beanbag to a toss-across game, and when she threw the beanbag her feet barely moved off the floor (normally her spasticity kicks in when trying to move either her hands or feet). She still resists putting her feet on any surface, either due to pain, sensitivity in the feet, tiredness/poutyness, or confidence. When doing standing drills we hold her under her arms--today we did get her to bear some of that weight in her hands AND feet (holding on to a surface while partially standing).
We did PROM every 3 hours until mid-afternoon, after that I forgot until her bedtime. Her range looks great, and she is more relaxed and does not shy away from anything touching her feet. She also has excellent "potty awareness"--the nerves they cut are extremely close to those responsible for bowel/bladder function, but as of day 2 she has been informing us of her elimination needs.
Another goal is to sit her up 1-2 hours per day, either in a wheelchair or other chair, provided her joints are at appropriate angles. She can stay in a sitting position (involves trunk strength and balance) by supporting her weight on both sides, or holding on with only one hand. After enough time, she will fall to one side. When in her wheelchair for long times, she will list, but she can sit upright with voice cues. We prop up her arms for balance as well as fit (the wheelchair is a little wide for her).
She does ask to "put her shoes on" when wanting to do something out of her current range--she needed her AFOs and shoes in order to move well (balance foundation) prior to surgery. She thinks that by putting these on, she will be able to move like she used to. It will take her a while to realize that isn't the same now. I'm not sure when we'll be using her AFOs, but it isn't now.
For fun, we played hide-and-seek in the lobby under construction, played "school" with Grandma, and played with her toys given to her by visitor friends (as well as watching lots of Curious George). I'm seeing more and more of my girl E every day, only LESS TIGHT. Dr. Elias came by this morning at rounds and said she looked "perfect". WEEEEEE!
Saturday, February 21, 2009
Day 3
In my mind, I figured Day Three would be our turnaround day. It was, in a way. We left the PICU late last night (Elena didn't need intensive care yesterday; the main pediatric ward was full). This morning, Elena had more of an appetite and was in much better spirits. She is able to sit up a little more, and can enjoy playing with both hands in a recline sitting position.
PT came in the late morning and stood E up again, this time with her feet on the floor. She stood up better today, willing to bear more weight on her feet than yesterday. The floor is also hard and cold, but she didn't seem to mind the different texture on her feet. She also complained of her feet being cold, and now wears socks willingly (before she didn't want anything touching her feet). We have a PROM regimen, supposed to be 5 times daily, and we can give slight pressure against resistance. INSERT PROM/MOVEMENT RULES (I had to give my copy to E as drawing paper today)
The rest of the day was not as great as the morning...the PICU is a place of quiet solitude compared to the main ward. Everything there is *loud*. E hasn't slept much since the procedure, and she didn't sleep at all today. We were supposed to do another standing drill, but E was very uncooperative so it was very short. After that we put her in her wheelchair (sitting regimen, supposed to do 1-2 hours per day) but she was very upset with it, and said she was nauseaous, so that was cut short today. Hopefully tonight she will rest well, and tomorrow she will eat well.
PT came in the late morning and stood E up again, this time with her feet on the floor. She stood up better today, willing to bear more weight on her feet than yesterday. The floor is also hard and cold, but she didn't seem to mind the different texture on her feet. She also complained of her feet being cold, and now wears socks willingly (before she didn't want anything touching her feet). We have a PROM regimen, supposed to be 5 times daily, and we can give slight pressure against resistance. INSERT PROM/MOVEMENT RULES (I had to give my copy to E as drawing paper today)
The rest of the day was not as great as the morning...the PICU is a place of quiet solitude compared to the main ward. Everything there is *loud*. E hasn't slept much since the procedure, and she didn't sleep at all today. We were supposed to do another standing drill, but E was very uncooperative so it was very short. After that we put her in her wheelchair (sitting regimen, supposed to do 1-2 hours per day) but she was very upset with it, and said she was nauseaous, so that was cut short today. Hopefully tonight she will rest well, and tomorrow she will eat well.
Friday, February 20, 2009
Day 2
Jason takes the night shift, the tough one. Elena had a rough time with nausea and lack of sleep. I came in this morning to Daddy having some holding time. Elena is much much calmer when she is being held.
There were a lot of changes today: Elena has her bed elevated (reclining), she is able to lie on one side of her body (torso and waist must be in-line). Jason noticed while she was sleeping that her ankles were bent, which was new.
She had her first real visit with the physical therapist today. Elena wanted to get off her back, as it was uncomfortable--so the therapist just stood her up. Literally. Partial weight-bearing, with the intention of putting her heels down a little. At first Elena resisted, cried, asked for me--but after she was up, she was quiet and seemed to realize things were not so bad. I was amazed that she could do this so soon. And her feet? Almost flat! With her legs pretty straight, too!
After that, they did Passive Range of Motion (PROM). The PTs moved her legs to the point of resistance OR to a certain angle, as not to put pressure on her back. Important to note this is *not stretching*. Her range was AMAZING. We could definitely not achieve these positions without serious resistance (especially her right leg, which is in the bottom pictures.
That was the extent of PT in the morning--a big change for Elena, and a glimpse of what her legs might be like months from now. PT returned later in the day to do more standing, and they asked Elena if she would walk to me (she didn't want to, but "asking" wasn't exactly what the PT meant)--and E DID!! She walked 3 steps (with assistance, of course) but that was MAJOR. Her reward was I got to hold her, but she didn't have to be flat. It was fantastic.
After that, Elena got to sit in a wheelchair. This is a big deal b/c she's in a position other than lying down, and you have to have trunk strength to sit up. We went on a stroll around the 7th floor, with our Dora balloon, and even downstairs to the main floor to see the Coffee Ladies. The idea of going on an "adventure" out of the PICU made E very happy.
Thursday, February 19, 2009
Day One
Elena is still in a considerable amount of pain, but she's much improved since yesterday. She can sleep for an hour at a time, but her startle response keeps her from resting well. For those who don't know, people with spastic CP "startle" like you or I do, when surprised, or scared, but it's much more intense of a muscle spasm--and for someone who just had back/nerve surgery, that spasm HURTS LIKE HELL. And Elena typically does it after 20-30 minutes of sleeping, so she doesn't rest well.
She was allowed to "move" this afternoon (lying on one side or the other) but the transition is very painful. I was also allowed to hold her, but it was difficult to move her with all her cords attached, and it's a 2+ person job b/c we have to keep her "flat" during the transfer. She rested well in my arms though, so I was thankful.
We are also having a problem with nausea...the pain meds keep her sort of comfortable, but she can't keep even small amounts of liquids taken by mouth b/c of them. She now has regular anti-nausea medication, but she has to take them 8 hours apart, which is a long time. She hasn't ingested anything since Tuesday night, but we're hoping tonight she can keep enough liquid down to justify trying solid food (cracker(s)). Once she's able to eat something, I think she'll start turning a corner. PT starts tomorrow (it was supposed to start today, but E was resting when the therapist stopped by).
Her feet also hurt. This is not surprising after cutting nerves--I guess it's a painful tingle, felt more in her right foot than the left (b/c more nerves were cut on that side). She does not like to be touched below the knee, especially on her feet, and says it hurts. But after some whining, she's relatively quiet. Lots of books, lots of videos. She's a very good patient.
Overall her status update is great. She is exactly where her doctors thought she would be. That's great, but as a parent, you wish your child wasn't hurting...
Wednesday, February 18, 2009
The PICU
About 4 hours later we got the call that Elena was in the PICU. We weren't sure what to expect...I figured it was probably between a hysterically crying, flailing kid and a totally serene sleeping beauty. Um, sort of.
Elena was hooked up to a ton of tubes and monitors. Horribly reminiscent of the NICU. Elena was awake, sort of--moaning, crying, in pain. Her eyes were puffy from edema--lying face down for 4 hours will do that--and her throat was swollen/scratchy from the trach tube, and she was groggy/disoriented/nauseous from the anesthesia. The next couple of hours were spent trying to figure out what she could tolerate safely for pain management.
I thought once they figured out what painkillers to give her, our PICU stay might be smooth sailing--but I was wrong. Apparently, even though resting is the best medicine for sickness/post-op, there "is no rest in the PICU". She has to be checked every hour, and really, her "sleeping" is for 20 minutes at a time at best. She holds her breath a lot and winces. She is supposed to be much improved after the next 24 hours, where we should be transferred out of the ICU and to the main pediatric ward.
Her first sentence, after having her sheets changed and being moved around:
"Mommy!" *whining* "THIS IS NOT VERY FUN."
The good news was we got the news from the neurosurgeon that the surgery went beautifully. After checking her nerves, he confirmed that her spasticity was located only to her legs below the knee. When he found a spastic nerve, it was "off the charts" in terms of a spastic signal--meaning, there were no nerves that were mildly spastic, which made the judgement of which nerves to cut much easier. He found (and cut) more on her right than her left (which makes sense, as her right leg is tighter) and he feels like she is a "textbook case" of a patient that can benefit from this procedure.
The incision is maybe a and inch and a half long--could be smaller, I didn't get a good look. After it heals I'm not sure I'll even notice it.
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