12yo in foot cast, wheelchair questions

[mamabunny]

@tmfranlk:

YES - your LOCAL Shrine Temple should be able to help you secure a wheelchair, and potentially any other DME your daughter will need. Our Local Shriner Temple has a mind-boggling amount of wheelchairs, crutches, etc. to loan out to Hospital patients.

Contact the Hospital Transportation Department at your local Shrine Temple. If, by chance, they don't have any wheelchairs available, do check with your local Masonic Temple as your next source. Be sure to let them know that your daughter is a patient at the Hospital.

On your next visit at the Hospital be sure to ask about what resources will be available after her first surgery for her, and the family. They should also be discussing what to expect regarding surgery and afterwards with her at the visit prior to surgery. If at all possible, ask for a tour of the part of the building where she will be staying. At SHV, the older kids are grouped together, and have an "adult-free" zone they can hang out in. (Sorry. So much I forgot to tell you - see, I had shut off this part of my brain for the last 3 years LOL - had to wake it back up!!!)

Also - bike gloves are great for the wheelchair pusher - as well as users who self-propel. Often, the handlebars that the pusher must use are a hard, ribbed plastic, and they create blisters very quickly. So, taking along a set of universal-fit bike gloves for whoever must use them is not a bad idea! The first time I had to push an adult around WDW, I would have paid $100 for a set of those gloves well before the day was over! Even if the handlebars are covered in memory foam, unicorn fur and cotton candy... use the gloves.

I don't know if you travel with the Shriner's (our Temple has a fleet of vans that run back and forth between the Temple and the Hospitals in SHV & STL - they fly kids to Chicago and other Hospitals around the country as needed) or if you drive yourself, but I would recommend that if you can at all, drive yourself to the Hospital for the surgeries. The only reason I would encourage this is because typically the ride home after surgery is the toughest - you want to be able to stop whenever/wherever she needs. Also, if you cross state lines to go home, be sure to stop at a pharmacy near the Hospital before leaving to fill any pain prescriptions. It has something to do with the doctor who writes the prescription must be licensed to practice medicine in the state that the rx is filled in? Anyway, we learned that early on, courtesy of some of the more experienced parents and van drivers.

Finally, I want to tell you that our daughter had one goal growing up, and that was to be able to walk the stage for her diploma at her high school graduation. The Shriner's Hospitals made that happen; she was able to walk for much longer, and further than anyone ever thought she would be able to before she had to start using her chair on a regular basis. She even got to wear high heels for one magical night at her Sr. Prom! (it nearly killed her, but she did it! LOL) When she was born they told her daddy and I that she would never be able to walk, so the gift they gave her was literally priceless to us. They did all they could for her, and I remain to this day, insanely grateful for it.

The doctors at Shriner's are some of the finest you will find. Unlike many specialists outside the Hospital system, all they do all day is treat children - they are uniquely qualified to deal with the issues that growing bones and bodies require when it comes to surgery, orthotics and prosthetics. Not every child is a "fit" with the Shriner's Hospital system - they do have conditions that they specialize in - but if your child is accepted as a patient there, know that she will receive world-class care. Probably the best thing about Shriner's to me is that everyone who works there is focused on your child, and her well-being.

Truly, I wish nothing but the best for her, and for you - safe travels, swift healing, and all the Magic you can find along the way.

 

[tmfranlk]

Thank you all so much for all of your input, especially @mamabunny !!

We had our appointment at Shriner's in St. Louis (we're local there) on Wednesday and it was outstanding! It turns out that her doctor is the Chief of Staff so that helped ease my ongoing hesitancies about the process and the doctors we had seen elsewhere so far. I was so impressed with the whole visit and how thorough they were even though we were there for a second opinion. I had no idea what the process (if there was one) of even being accepted as a patient was and went in pretty blind. I just called on a whim after my mom suggested it knowing I wasn't wholly comfortable with our first two locations.

Terra has been accepted as a patient and they will be calling this week to set up the surgery. One major difference between Shriners and the other two doctors so far is that they said the two surgeries (one each foot) will be more like 9-12 months apart where as the others were talking 8 weeks-3 months. I'm sure those were their minimums, but that is a far cry from Shriners' "a year, maybe nine months if she's healing more quickly". I think that difference alone made me feel more comfortable because someone was acknowledging the significance of this procedure and that the first foot will need to be fully healed in preparation to support full-weight after the second surgery.

Right now the Patient Care nurse said that the doctor is scheduling in the fall right now. When she calls this week we'll see what that means. If it's early Sept-ish, we'll probably go for it then and then have our trip in late Nov. If he's scheduling more like late October I think we're going to hold off and do the surgery after the trip. I'm still trying to research and understand the full insurance/billing process with Shriners so we may do the first part of January so both surgeries could be in the same deductible year.

We're lucky that the most we've ever had to deal with for Terra's feet has been pain in longer walking days (zoo, Disney trips, etc). Until she was about 9 we could manage with a stroller as back up. Now it's just the right time in her development to go this route and (hopefully) fix it for good. If we do wait for surgery until after the trip, we may still do a wheelchair on a day-to-day basis depending on how she's doing at that part of the trip, probably just needing more toward the end of our stay. Mostly she's just looking forward to not having to worry about the pain anymore and hoping that the reshaping makes it easier for her to run and keep up with friends/cousins.

Thank you. Thank you. You all have helped me work through the realities that my brain wasn't able to see yet and helped me with a clearer picture of our next year or two and next trip or two. Have a magical day!!

 

[JennyDrake]

I have a dumb question and maybe you have already addressed it and I missed it???

Is she going to be WEIGHT BEARING on that leg? If not, it really changes the ride situation as she will HAVE to put weight JUST on the one leg to get in/out of some rides.

Will she be in a regular cast or a WALK ING cast? Again, a few differences. Regular casts are rounded on the bottom and can be VERY slick.

 

[tmfranlk]

Yes she would be non-weight bearing. I am assuming a regular cast because of that, but I haven't heard that for certain yet. Thanks to you all my brain started processing more and more on what that would all really mean. With the new doctor I think our schedule will either be surgery one and out of cast before the trip or surgery one just after the trip.

 

[JennyDrake]

If she is zero weight bearing, I doubt she will be able to ride any of the rides where you step DOWN into the ride vehicle (Space, Splash, POTC, RNRC). Even if she can get INTO the ride vehicle one legged, she will not be able to get out.

In 2013 I spent 12, long, long weeks of ZERO weight bearing post op. You don't realize what all you can't do until you are in that situation---even if you are adept at crutches. (i.e. I could not get INTO a pick up truck as you have to lift one leg while standing on the other) After that I was a little over 3 weeks in a walking boot--and then I had a trip to WDW. While I was vertical and mobile, I was FAR from strong or agile--even having 2 feet (sorta) I could not get in/out of the ride vehicles where you had to step DOWN to get in without assistance. BTW, I am not overweight and I was a runner and dancer pre-injury.

 

[ttintagel]

If a pillow doesn't work and a special cushion is out of your price range, maybe you could get foam padding from the fabric store, cut it to the right size, and put a beach towel or something over it.

Having been to WDW with a broken foot, I know it's easy to not notice pain and fatigue because of the heat and overstimulation. If she's on any medication for pain, I found it was better to stick to a medication schedule rather than waiting to notice pain before I treated it, and to elevate my foot whenever I was resting rather than wait until I noticed discomfort.

 

[Nanajo1]

Sometimes a pillow is not firm enough and you feel like you are sitting in a sling. The firm foam sounds good. Search on line you may find a really inexpensive one. Good luck.

 

[mamabunny]

Thank you all so much for all of your input, especially @mamabunny !!

We had our appointment at Shriner's in St. Louis (we're local there) on Wednesday and it was outstanding! It turns out that her doctor is the Chief of Staff so that helped ease my ongoing hesitancies about the process and the doctors we had seen elsewhere so far. I was so impressed with the whole visit and how thorough they were even though we were there for a second opinion. I had no idea what the process (if there was one) of even being accepted as a patient was and went in pretty blind. I just called on a whim after my mom suggested it knowing I wasn't wholly comfortable with our first two locations.

Terra has been accepted as a patient and they will be calling this week to set up the surgery. One major difference between Shriners and the other two doctors so far is that they said the two surgeries (one each foot) will be more like 9-12 months apart where as the others were talking 8 weeks-3 months. I'm sure those were their minimums, but that is a far cry from Shriners' "a year, maybe nine months if she's healing more quickly". I think that difference alone made me feel more comfortable because someone was acknowledging the significance of this procedure and that the first foot will need to be fully healed in preparation to support full-weight after the second surgery.

Right now the Patient Care nurse said that the doctor is scheduling in the fall right now. When she calls this week we'll see what that means. If it's early Sept-ish, we'll probably go for it then and then have our trip in late Nov. If he's scheduling more like late October I think we're going to hold off and do the surgery after the trip. I'm still trying to research and understand the full insurance/billing process with Shriners so we may do the first part of January so both surgeries could be in the same deductible year.

We're lucky that the most we've ever had to deal with for Terra's feet has been pain in longer walking days (zoo, Disney trips, etc). Until she was about 9 we could manage with a stroller as back up. Now it's just the right time in her development to go this route and (hopefully) fix it for good. If we do wait for surgery until after the trip, we may still do a wheelchair on a day-to-day basis depending on how she's doing at that part of the trip, probably just needing more toward the end of our stay. Mostly she's just looking forward to not having to worry about the pain anymore and hoping that the reshaping makes it easier for her to run and keep up with friends/cousins.

Thank you. Thank you. You all have helped me work through the realities that my brain wasn't able to see yet and helped me with a clearer picture of our next year or two and next trip or two. Have a magical day!!

Unless something has changed... Shriner's care is always FREE for children. We have always been blessed with outstanding health insurance via my husband's employer (American Airlines) and the Shriner's Hospital in Shreveport never once filed on it. When I encouraged them to do so (many, many times over the 18 years that our daughter was a patient there) they simply told us that they don't have a system in place to do that.

Shriner's has always had a policy that every child who is eligible to be treated (has a condition that is treated by the Shrine Hospital System, for example, burns, cleft palate, scoliosis, clubfoot, just to name a few) will be treated regardless of the ability to pay. Since they wouldn't take my money, I spent those 18 years raising money and awareness locally for our Shrine Temple!

Lucky you, living in STL! I had the honor and pleasure of living in St. Louis until I was almost 9 years old, and to this very day it remains one of my favorite cities to visit! The Gateway Arch was being built at the time, and like many other families, once a week we would go downtown and take a picture in the same spot to document the rise of the two legs! I went to Cardinals games at the "Old" Busch Stadium and the "New" Busch Stadium (which I think is now technically the "old-new" or "new-old" Busch Stadium LOL) and we spent many, many happy hours out at the Busch Farms, on The Hill (where my Godparents lived, and where I learned about the wonder and the joy that is homemade sauce) and of course at Forest Park.

BUT, back to the topic at hand. YES - your instincts are exactly correct! The doctor at Shriner's is going to make sure that the first surgery is completely healed and that foot is in the best shape possible prior to undertaking the second surgery. It also gives them valuable information about the internal structure of her feet, how rapidly she heals, how much scar tissue she makes, and her compliance levels (for any braces or physical therapy that they prescribe).

Just as an FYI, there may or may not be braces, special shoes, or physical therapy. I know - from personal experience - that sometimes kids (especially at that age) don't want to deal with that kind of "stuff". They will try to make your life miserable, in the hopes that you will just give up and go away, and not make them do it.

Don't. Please don't. Don't give up, don't go away, don't make like Elsa, and just "Let it Go"...

Over the 18 years that we traveled to and from the Hospital in Shreveport, I saw many, many kids make return trips that didn't need to - because the parents "got tired of the whining". Or they "couldn't stand being mean to him". Or "She will throw such a tantrum...".

The doctors at Shriner's will not ever prescribe shoes, braces, physical therapy or any other treatment "just because". They don't "blanket prescribe" *anything* there - they are a non-profit Hospital that runs 21 hospital locations around the U.S. on about $1million dollars per day.

Every pair of braces or special shoes that they may fit on your child costs them money. Money that comes directly out of their budget. So, they don't prescribe these things unless they are absolutely medically necessary for your child.

If your child is sent to O&P (Orthotics and Prosthetics) to be fit for braces or shoes (or some other device) it is because it is medically necessary. So please, talk with your child in advance. Explain that to get to her ultimate goal, she will have to do whatever the doctors ask.

One last comment on this topic - sometimes the doctors will not know if braces, etc. will be needed until *after* the surgery. So, you may feel a bit "blindsided" if all of a sudden they want her to wear AFOs or SFOs for 6 months. That's OK - it's what she needs to heal properly.

As you can see, they schedule surgeries quite a bit further out than many doctors. In our daughter's case, when we made our very first trip to the Hospital (we went exclusively to Shreveport) her doctor (who was the Chief of Staff there) asked us what we were doing "next month". I told him that the only thing on the agenda was a birthday party - and he told us that were coming back for surgery. When the scheduling nurse came in afterwards, she explained that for us to come back in less than three months was the equivalent of "emergency surgery", the fact that we were coming back in less than 3 weeks was almost unprecedented for them! She was at just the perfect point in her growth to do the surgery, and the Doctor didn't want to miss that window.

When it comes time for the surgery, be prepared for the hospital stay - the first 48 hours after surgery are typically the most difficult to get through, and after that, things will improve! You will most likely be offered a bed in her room so that you (or another parent or guardian) can stay. Someone should stay with her. The nursing staff is awesome - but she will be experiencing pain, discomfort, and possibly be disoriented from the pain meds. She will need her Mom or her Dad there with her. Along with her favorite bear, or blanket (or both!) and any other "comfort" items. I know that living in the same city it will be tempting to go home, but she will want and need you there for at least the first few days.

Years ago, the average hospital stay for foot surgery was 7 to 10 days. I don't know if that has changed, but be prepared for at least that. She will get all her meals from the Hospital kitchen - you will be given at least 1 free meal per day, and can purchase your other meals in the cafeteria. The Hospital Cafeterias are all non-profit, so the cost per meal is typically VERY reasonable, and the food is always healthy and tasty!

She is in great hands at Shriners. I know - from experience - how overwhelming it can be the first few times you go there. If you have any questions that I can answer, feel free to reach out to me via these forums. I am typically here at least once a week!

(((hugs)))

MamaBunny

 

[tmfranlk]

Thank you, thank you, @mamabunny! We've been jumping around with our surgery dates and squeezing in appointments so much that I didn't want to come back to the board until I knew more. Little did I know that when I did you'd have just the words I needed to hear!

I think we're in the "perfect point in her growth" place too as surgery is tomorrow! We were scheduled for last Monday, but there was a scheduling issue. They called the Wed before to let us know and could offer the next day, but that was too quick for my daughter's anxiety over short notice changes. We thought that would mean another couple of months, but the next day they called with a July 27th date. Another doctor's surgery cancelled and he gave his OR spot to our doctor for Terra. We did preop that first week anyway due to schedule issues which turned into "you know, I'd really like her to see a neurologist before the surgery." We're getting the special treatment left and right apparently because the neurologist made a special trip over this week to see her and then got testing to make a space for her on Friday for that. Luckily that all seems normal so we shouldn't have to worry there.

Since we're local and they've shortened a lot of hospital stays from what I understand, she will only be in the hospital overnight, though maybe a little longer depending on pain management and how she's managing getting around. She'll have a split/heavy cotton wrap for two weeks and then cast for 4-5, all non-weight bearing. After that probably a boot as well. The thing she's most focused on right now is that this means she'll be uncasted and doing better by our Nov trip. I know the fatigue issues may still need a wheelchair, but we can play that by ear and it's a much easier thing to work with than the cast, etc. I know it seems silly to focus on that, but I think right now that's the one piece of all of this that she can understand. The rest of it is the great unknown and she already doesn't do well with the unknown. Mix that with knowing that unknown is going to hurt and she's a little freaked out, though she's trying to hide it. I'm comforted knowing she's in good hands and advice like yours helps that so much. Thank you!

Speaking of the unknown, I'll make sure to prepare her for the possible braces, thank you. I know he's doing an shoe insert for her other foot so that it will have more support while bearing the recover weight. Another doctor also mentioned an insert after surgery to support the healing process so she's at least heard about that. We'll start talking about the other possibilities so that she's prepared.

Thank you too for the packing advice. That's on our to do list today along with getting her spot at home set up. I will definitely be staying with her overnight and know there's a couch bed in the room plus parents' room with beds and showers nearby.

I'm so glad I happened upon just the right place for advice even on the outside of Disney part. I was trying to find groups/boards online, but didn't have much luck. You've been a great comfort.

 

[KPeveler]

Yes she would be non-weight bearing. I am assuming a regular cast because of that, but I haven't heard that for certain yet. Thanks to you all my brain started processing more and more on what that would all really mean. With the new doctor I think our schedule will either be surgery one and out of cast before the trip or surgery one just after the trip.

I would definitely think about bringing her crutches with you in the parks - you can either get a crutch carrier on the wheelchair, or you can rest them on the footplate of the chair and tie them to the armrest (I used to use a bandana for this). That way she can more easily transfer into ride vehicles.

 

[mamabunny]

Thank you, thank you, @mamabunny! We've been jumping around with our surgery dates and squeezing in appointments so much that I didn't want to come back to the board until I knew more. Little did I know that when I did you'd have just the words I needed to hear!

I think we're in the "perfect point in her growth" place too as surgery is tomorrow! We were scheduled for last Monday, but there was a scheduling issue. They called the Wed before to let us know and could offer the next day, but that was too quick for my daughter's anxiety over short notice changes. We thought that would mean another couple of months, but the next day they called with a July 27th date. Another doctor's surgery cancelled and he gave his OR spot to our doctor for Terra. We did preop that first week anyway due to schedule issues which turned into "you know, I'd really like her to see a neurologist before the surgery." We're getting the special treatment left and right apparently because the neurologist made a special trip over this week to see her and then got testing to make a space for her on Friday for that. Luckily that all seems normal so we shouldn't have to worry there.

Since we're local and they've shortened a lot of hospital stays from what I understand, she will only be in the hospital overnight, though maybe a little longer depending on pain management and how she's managing getting around. She'll have a split/heavy cotton wrap for two weeks and then cast for 4-5, all non-weight bearing. After that probably a boot as well. The thing she's most focused on right now is that this means she'll be uncasted and doing better by our Nov trip. I know the fatigue issues may still need a wheelchair, but we can play that by ear and it's a much easier thing to work with than the cast, etc. I know it seems silly to focus on that, but I think right now that's the one piece of all of this that she can understand. The rest of it is the great unknown and she already doesn't do well with the unknown. Mix that with knowing that unknown is going to hurt and she's a little freaked out, though she's trying to hide it. I'm comforted knowing she's in good hands and advice like yours helps that so much. Thank you!

Speaking of the unknown, I'll make sure to prepare her for the possible braces, thank you. I know he's doing an shoe insert for her other foot so that it will have more support while bearing the recover weight. Another doctor also mentioned an insert after surgery to support the healing process so she's at least heard about that. We'll start talking about the other possibilities so that she's prepared.

Thank you too for the packing advice. That's on our to do list today along with getting her spot at home set up. I will definitely be staying with her overnight and know there's a couch bed in the room plus parents' room with beds and showers nearby.

I'm so glad I happened upon just the right place for advice even on the outside of Disney part. I was trying to find groups/boards online, but didn't have much luck. You've been a great comfort.

I have been praying for you all today - I truly hope that surgery went well, and that soon you will be home!

It sounds like you have had some great pre-op news, and I am so thrilled for you! And you are so lucky to be going home so quickly! Everyone always feels better sleeping in their own bed!

Help her stay focused on the upcoming trip to WDW; having a goal is important for anyone who is trying to heal and recover!

I hope to hear about a wonderful recovery soon!

(((hugs)))

 

[Ariel8676]

Just wanted to let you know that I have been thinking about your daughter and your family, I hope the surgery went well and she is on her way to a speedy recovery <3 xo