We have a surg date!! Please help! Panic!!

[ghb1967]

My 13yo daughter is scheduled for surgery with Dr. Betz on Feb 28th!!!!!!!

We searched for 2 years to find a diagnosis - we never really got one - but at least it's getting fixed. She apparently has an ongoing auto-fusing taking place between her vertebra on the anterior side. (T-8 - T-12). She was worked up at 11 for ankylosing spondylitis (but had no other sx except the spine fusing). As she has grown she has developed exagerated kyphosis of her thoracic spine (a hunch-back). Dr. at Emory was ready to cut and do posterior fusion June 06 but had never even seen this before. Got another opinion that said it was congenital and posterior fusion wouldn't hold - nothing could be done. Went to Shriner's Philly (we live in GA) to Betz. He looked closely at all her past xrays and lab work - did a very thorough history. Not congenital thinks it is severe Sheurmann's and those vertebra fused together on their own. He will collapse her lung to get to anterior side of spine and remove the bone that has grown between her vertebra then turn her over and surgically fuse her with bars posteriorly.

Okay - Questions I have for you all.

Pre-op questions

Should we have the somosensory Evoked Potential tests (SSEPS) done in Philly? I don't really know what it is but I think is to establish a baseline for nerve connections. Do they use this in surgery to asses for spinal cord injury? Should we have it done in Philly in case of complications to make comparison easier?

We have insurance but Shriner's doesn't accept. Will insurance help out in pre-op autologous blood donation from Chelsea and transporting it to Philly or will this be out of pocket expenses?

How many units do they let the kids give within two months?


Things to take to the hospital?

When does the pain become bearable so they can move about (i.e. come home)?

When will she be able to make the flight home?

We were told she would have a 4 week post-op appt. Should we stay in Philly until then? Or make the trip back? (keep in mind this is Philly in Feb for Southerners with no snow!!)

If she will not be ready to fly home in a week should we just stay in Philly/
Should we take the train home and get a sleeping car or will that be too much jostling and unsteadiness when she walks? (it's a 16 hour train ride)

School Questions?

I was told by our county that they do not assist with home bound students out of state and that I should enroll her in school in Philly

They also said that if she can not be in her desk (by mid April) to take the CRCT (an exit exam for 8th grade) that she would have to sit for the test after attending summer school or repeat 8th grade.

They also said that she would recieve an incomplete for missed work - have ten days after school dismisses for summer to complete the work or repeat the 8th grade.

Can someone tell me about the 504 plan and how that might help/apply to post-op kids and how I go about "signing up" for that?

OKAY!!!
I have tons more but I will stop there and wait for you all to assist my mind in this spiral spin.

So sorry for the length of this. Please help.
Gayle

[mibre]

Gayle, My daughter had a spinal fusion at Shriners in Phila last January when she was 14 years old. Shriners is an incredible hospital and Dr. Betz is a wonderful doctor. My daughter has an appt with him Jan. 2nd.
I know how anxious you must be and I will do my best to answer all your questions.
I would ask Dr. betz or his assistant about where it is best to have the SSEPs. My daughter had it in Phila but we only live 90 minutes away. When My daughter was at the hospital ,there was a spinal fusion patient from Florida and she flew home after a week. I would definitely plan to go home. Your daughter will feel better being in her own house and it would also solve the school issue. It is amazing how resilient these kids are. My daughter was tutored at home for a month with tutors provided by the school. She also had to tkae 8th grade testing 2 months after her surgery. We had the 504 plan and she was able to sit in a comfortable chair in the nurses office to take the tests. Ask you school's guidance counselor for help.
Talk to the red cross about the blood donations. They will be able to answer all your questions. Your insurance should be able to cover all pre op testing not done at Shriners.
Take toiletries, cotton pjs for your daughter ( it can get hot at night). Sweats and comfortable clothes for you and a pillow for yourself when you sleep by her bed at night.
You can email me if you have any further questions. I wish you the best of luck. Mindy

[LindaRacine]

Hi Gayle...

Though originally developed for adults going into scoliosis surgery, the following page might be of help:

http://www.scoliosislinks.com/PreparingforSurgery.htm

Regards,
Linda

[Carmell]

Hi Gayle,

Here are my opinions of your questions...

<<Should we have the somosensory Evoked Potential tests (SSEPS) done in Philly? I don't really know what it is but I think is to establish a baseline for nerve connections. Do they use this in surgery to asses for spinal cord injury? Should we have it done in Philly in case of complications to make comparison easier?>>

I don't have experience with this test. I would contact Shriners and ask them specifically. They can help you determine if having it done at their facility would be better than done locally. Good luck with that one.

<<We have insurance but Shriner's doesn't accept. Will insurance help out in pre-op autologous blood donation from Chelsea and transporting it to Philly or will this be out of pocket expenses?>>

Some insurances don't pay for blood donations. Many times this is an out of pocket expense for anyone. Since she's having anterior surgery, there is a higher chance of her needing some blood transfusion (typically more blood loss with anterior surgery than just posterior surgery).

<<How many units do they let the kids give within two months?>>

Usually, they don't allow blood to store more than 30 days. Again, call the hospital and ask what they recommend, since you live out of state. Maybe a direct donation from you or a friend would be second best (to her own blood).

<<Things to take to the hospital?>>

There is a list of good suggestions on Linda's website about things to take to the hospital. The biggest thing to remember is to LABEL everything you take from home. Take slippers or slip-on shoes that have rubber soles. This is very important so she doesn't slip or fall when she first starts standing again. Things like that.

<<When does the pain become bearable so they can move about (i.e. come home)?>>

She will likely be in-patient for about a week. With good pain meds, she'll be able to travel well soon after this time.

<<When will she be able to make the flight home?>>

My Braydon had major back surgery when he was 6 yrs old. We live in Utah and this surgery was done in Texas. We flew home 3 days after he was discharged from the hospital. I chose to stay near the hospital for a few days post-op in case there was a problem and we needed to go back for some reason. We didn't. He did just fine. The flight home went well. We used pillows for him to sit ON, one behind his back, and one on each side of his body - encased him in pillows. That worked well for him. We had to change planes on the way home, so we used a motor cart to transport him from one terminal to the other, without exhausting him too much. Again, good pain meds, and keeping ON SCHEDULE with the pain meds makes this do-able.

<<We were told she would have a 4 week post-op appt. Should we stay in Philly until then? Or make the trip back? (keep in mind this is Philly in Feb for Southerners with no snow!!)>>

The post-op appointment will be in late March/early April. Much better weather (should be) than February. I wouldn't stay in Philly unless she has major complications and you NEED to have Dr. Betz take care of her. This is also a good time to suggest that you have a local ortho in your area fully aware of the surgery being done and their willingness to help with any plans or complications that may come up.

<<If she will not be ready to fly home in a week should we just stay in Philly/
Should we take the train home and get a sleeping car or will that be too much jostling and unsteadiness when she walks? (it's a 16 hour train ride)>>

Car or train rides would be much worse than a flight. Any bumps in the road, turning too sharp, braking or accelerating too fast are all things Braydon HATES about the ride home (2 hours for us in the car).

<<School questions?>>

If your school is a public school, they must allow you to file a 504 plan for her. This is a federal law. However, many schools who aren't accustomed to the 504 plan make it very difficult for parents to have these necessary acommodations for their child. The 504 plan is not easily enforceable, in some instances.

That said, I would contact as many people in the school system as possible to make sure you know her rights (and your rights as a parent). You would think that with the seriousness of this procedure, they would WANT to help you get her through the rest of this academic year without too much inconvenience on anyone's part. Postponing the surgery (even if recommended by the doc) wouldn't help because the older they get, the harder it is to stay caught up in class. I'd think the school would WANT her to have it done sooner than later. Do you have a special education teacher/counselor who understands 504 plans or even IEPs? This person, if there is one, should be able to help. Your daughter can't be the only student in the entire district that has to miss school. Good luck with this.

[Scoliosis_Gal]

wow

that's so early! i could never have gone through surgery at 13! i still freak out whenever the doctor tells me i am definately going to need to think about it! Ive had some surgery, but not back surgery. I had surgery at 12, but it was not as serious. It was for me at the time, but when it was over i was just kinda like "i worried about THAT??" But this surgery is way more serious. I had a bar put in my chest for a pectus repair and taken out this summer, but i do know what it is like to have to wait. If you need anyone to talk to, i'm sure i can help a little!
Molly
PS good luck with the surgery!! I know she'll be fine, and she will recover quickly since she is so young.