Re: New casting location? - Stressful day...

[Guest guest]

well beth, i cannot even begin to understand all you are going through right now. however, i will hope and pray that julia gets done what needs to be done in her best interest. i am glad you had a positive experience in lexington. good luck!!!!

tracey

New casting location? - Stressful day...

I apologize for the book, in advance....Well many of you know that our casting experience didn't quite go as planned in SLC. Dr Shaffer (however he spells it) was unable to Intubate her and her airway ended up swelling shut, no cast we braced. We are back home and recooped and The SLC team helped us to get into our local Shriners 2 months sooner than expected (we had just moved). Yesterday was our first trip to our local Shriners (Lexington, KY). We went in with tons of info/questions ready to go. However, still quite concerned with whats next for us. The Drs at Lexington Shriners were great! We met with their Chief of Anesthesiology. He questioned a few things that happened in SLC and showed me s airway on the Xrays from SLC. He wasn't sure why there was question of why you can't see when there is an obvious curve of her airway on the Xrays. He plans to contact Dr S from SLC and talk with him more to see what was going on and why the problems occured. He felt pretty confident in working with and did not feel a trach should even be mentioned to us at this time (yipee). He also appointed himself as the person to care for and said that once we get everything figured out he will personally be the one working on her from then out. Even if we do have to travel to meet other Drs. He said there are ways to manage making sure he is the one sedating/intubating her just so we dont have drs trying new things each time and possibly failing.We also met with Ortho. Obviously we will be consulting with ENT and also Pulmonology to see their thoughts/opinions and we hope to have it all done and a group meeting with all Drs we just pulled into the picture sometime in Feb and move on from there. Lexington said that they absolutely WILL cast if everyone agrees. Which makes Lexingotn a casting site... They have the table and said they would be happy to cast her. I obviously must have looked shocked and he questioned and I told him what we had been told and how everyone had been against her being casted and we were told its "barbaric" and he had an interesting response we all may want to consider. He said "It IS Barbaric! Its hot, uncomfortable, heavy, miserable! However, surgery is no walk in the park. The fact is its all barbaric, but we have to do what we have to do for our children." I thought it was an interesting perspective....Anyway, back to the story. He feels casting may be the ONLY option for us. He feels we may have to cast and then fuse her once she has grown more and is hopefully straighter. has very abnormal ribs. They are "penciling" and very fine like feathers. He said he is not the expert on Veptr but that he isn't sure there is anything to anchor to. He said we would obviously have to consult with Dr or Dr Betz. According to him no one else would have near the experience we would need to have (I mentioned Cincy doing the procedure). He said they would do whatever needed to get us to one of them for us eventually once we have tests run, see about casting and how things progress. So it was a boat load of information. They also said if they decide to cast given our situation and all we went through that Shriners will be moving their casting table and all their staff to our local Uni hospital. He said that way ENT and Pulmonology and all will be right there with them and anything they may need is at their fingertips. He said after she is casted a few times if all is well we may consider moving back to shriners for it. So YIPEE! We may get casted, but of course we have some consults and opinions to get first. It is scary to think casting and fusing maybe our only options.I also would like to hear from anyone that has had "restrictive Lung disease" mentioned about their kids. What was said, what was the prognosis, etc. It was thrown out yesterday and I freaked, but then thinking about it..... is a little person how big do her lungs need to be. I would think its something that all our kids have in some form?If you made it this far.... thanks!Beth

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[Guest guest]

Beth,

That is AWESOME that KY was so helpful and open! I would definitely talk with Dr. and Dr. Betz, but don't totally rule out Cincy. They may recommend you go there (location, location, location) which of course would help with traveling and stuff - plus you would get a visit from me. LOL I really enjoy meeting other parents who are going through the same thing as I am. But if you go to TX, I have a friend who is a nurse there, and her DD is a Rib Kid.

Keep us posted!

Gail

New casting location? - Stressful day...

I apologize for the book, in advance....Well many of you know that our casting experience didn't quite go as planned in SLC. Dr Shaffer (however he spells it) was unable to Intubate her and her airway ended up swelling shut, no cast we braced. We are back home and recooped and The SLC team helped us to get into our local Shriners 2 months sooner than expected (we had just moved). Yesterday was our first trip to our local Shriners (Lexington, KY). We went in with tons of info/questions ready to go. However, still quite concerned with whats next for us. The Drs at Lexington Shriners were great! We met with their Chief of Anesthesiology. He questioned a few things that happened in SLC and showed me s airway on the Xrays from SLC. He wasn't sure why there was question of why you can't see when there is an obvious curve of her airway on the Xrays. He plans to contact Dr S from SLC and talk with him more to see what was going on and why the problems occured. He felt pretty confident in working with and did not feel a trach should even be mentioned to us at this time (yipee). He also appointed himself as the person to care for and said that once we get everything figured out he will personally be the one working on her from then out. Even if we do have to travel to meet other Drs. He said there are ways to manage making sure he is the one sedating/intubating her just so we dont have drs trying new things each time and possibly failing.We also met with Ortho. Obviously we will be consulting with ENT and also Pulmonology to see their thoughts/opinions and we hope to have it all done and a group meeting with all Drs we just pulled into the picture sometime in Feb and move on from there. Lexington said that they absolutely WILL cast if everyone agrees. Which makes Lexingotn a casting site... They have the table and said they would be happy to cast her. I obviously must have looked shocked and he questioned and I told him what we had been told and how everyone had been against her being casted and we were told its "barbaric" and he had an interesting response we all may want to consider. He said "It IS Barbaric! Its hot, uncomfortable, heavy, miserable! However, surgery is no walk in the park. The fact is its all barbaric, but we have to do what we have to do for our children." I thought it was an interesting perspective....Anyway, back to the story. He feels casting may be the ONLY option for us. He feels we may have to cast and then fuse her once she has grown more and is hopefully straighter. has very abnormal ribs. They are "penciling" and very fine like feathers. He said he is not the expert on Veptr but that he isn't sure there is anything to anchor to. He said we would obviously have to consult with Dr or Dr Betz. According to him no one else would have near the experience we would need to have (I mentioned Cincy doing the procedure). He said they would do whatever needed to get us to one of them for us eventually once we have tests run, see about casting and how things progress. So it was a boat load of information. They also said if they decide to cast given our situation and all we went through that Shriners will be moving their casting table and all their staff to our local Uni hospital. He said that way ENT and Pulmonology and all will be right there with them and anything they may need is at their fingertips. He said after she is casted a few times if all is well we may consider moving back to shriners for it. So YIPEE! We may get casted, but of course we have some consults and opinions to get first. It is scary to think casting and fusing maybe our only options.I also would like to hear from anyone that has had "restrictive Lung disease" mentioned about their kids. What was said, what was the prognosis, etc. It was thrown out yesterday and I freaked, but then thinking about it..... is a little person how big do her lungs need to be. I would think its something that all our kids have in some form?If you made it this far.... thanks!Beth

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[Guest guest]

Thanks Gail! Where are you guys again?

I don't think he ruled that out as a location to have it, but he said

we would definately have to see betz or campbell first. Her ribs on

one side are normalish scoliosis ribs, but the other side (where she

would need the instrumentation) is just odd.... I will have to take a

pic of the Xrays, but the ribs are less than 1/2 the width of the

other side and they are very very fine. He said they may be able to

fuse some together to create anchor points, he had no idea. He just

thought we definately needed ppl that were very experienced.

Time will tell. I am not totally opposed to letting her grow while

bracing and casting and fusing her. It is a bit different with us in

that will be a little people anyway. She may be 50 lbs full

grown. Of course we don't know exactly how large she will get, but we

are sure it will be tiny.

Beth

> Beth,

> That is AWESOME that KY was so helpful and open! I would definitely

talk with Dr. and Dr. Betz, but don't totally rule out Cincy.

They may recommend you go there (location, location, location) which

of course would help with traveling and stuff - plus you would get a

visit from me. LOL I really enjoy meeting other parents who are going

through the same thing as I am. But if you go to TX, I have a friend

who is a nurse there, and her DD is a Rib Kid.

>

> Keep us posted!

> Gail

[Guest guest]

Well then you aren't very far anyway regardless of where we get

" checked out " . Its only 2 hrs to Cincy from my house.

Beth

>

> I am 32 miles NW of Cincinnati Children's Hospital. LOL It is 32

miles from my driveway to the parking garage.

>

> Gail

[Guest guest]

Beth,

That is AWESOME that they are willing to move the table to your local hospital and do it there. Wow. What can I say? Shriners is just amazing.

What is the ortho's name? Maybe he was at the ETTP and learned how to cast there? I have a list of the doctors who attended.

I know that fusing the spine can cause restrictive lung disease and that is why they are starting to go more towards VEPTR these days. Is that what he is talking about? Or did he say she already had it because of how advance her curve is?

Noelle (12-2-01)Ian (8-15-04)

New casting location? - Stressful day...

I apologize for the book, in advance....Well many of you know that our casting experience didn't quite go as planned in SLC. Dr Shaffer (however he spells it) was unable to Intubate her and her airway ended up swelling shut, no cast we braced. We are back home and recooped and The SLC team helped us to get into our local Shriners 2 months sooner than expected (we had just moved). Yesterday was our first trip to our local Shriners (Lexington, KY). We went in with tons of info/questions ready to go. However, still quite concerned with whats next for us. The Drs at Lexington Shriners were great! We met with their Chief of Anesthesiology. He questioned a few things that happened in SLC and showed me s airway on the Xrays from SLC. He wasn't sure why there was question of why you can't see when there is an obvious curve of her airway on the Xrays. He plans to contact Dr S from SLC and talk with him more to see what was going on and why the problems occured. He felt pretty confident in working with and did not feel a trach should even be mentioned to us at this time (yipee). He also appointed himself as the person to care for and said that once we get everything figured out he will personally be the one working on her from then out. Even if we do have to travel to meet other Drs. He said there are ways to manage making sure he is the one sedating/intubating her just so we dont have drs trying new things each time and possibly failing.We also met with Ortho. Obviously we will be consulting with ENT and also Pulmonology to see their thoughts/opinions and we hope to have it all done and a group meeting with all Drs we just pulled into the picture sometime in Feb and move on from there. Lexington said that they absolutely WILL cast if everyone agrees. Which makes Lexingotn a casting site... They have the table and said they would be happy to cast her. I obviously must have looked shocked and he questioned and I told him what we had been told and how everyone had been against her being casted and we were told its "barbaric" and he had an interesting response we all may want to consider. He said "It IS Barbaric! Its hot, uncomfortable, heavy, miserable! However, surgery is no walk in the park. The fact is its all barbaric, but we have to do what we have to do for our children." I thought it was an interesting perspective....Anyway, back to the story. He feels casting may be the ONLY option for us. He feels we may have to cast and then fuse her once she has grown more and is hopefully straighter. has very abnormal ribs. They are "penciling" and very fine like feathers. He said he is not the expert on Veptr but that he isn't sure there is anything to anchor to. He said we would obviously have to consult with Dr or Dr Betz. According to him no one else would have near the experience we would need to have (I mentioned Cincy doing the procedure). He said they would do whatever needed to get us to one of them for us eventually once we have tests run, see about casting and how things progress. So it was a boat load of information. They also said if they decide to cast given our situation and all we went through that Shriners will be moving their casting table and all their staff to our local Uni hospital. He said that way ENT and Pulmonology and all will be right there with them and anything they may need is at their fingertips. He said after she is casted a few times if all is well we may consider moving back to shriners for it. So YIPEE! We may get casted, but of course we have some consults and opinions to get first. It is scary to think casting and fusing maybe our only options.I also would like to hear from anyone that has had "restrictive Lung disease" mentioned about their kids. What was said, what was the prognosis, etc. It was thrown out yesterday and I freaked, but then thinking about it..... is a little person how big do her lungs need to be. I would think its something that all our kids have in some form?If you made it this far.... thanks!Beth

PhotosGot holiday prints? See all the ways to get quality prints in your hands ASAP.

[Guest guest]

His name is Dr Henry Irwinski (he said remember whiskey). The Drs in

Salt Lake knew him and said he could/would cast. However, we had

called that shriners before we ever planned to move or went to Salt

Lake because it would be close to my mom/family. They had said no at

that time. He said they have casted for a long time and didn't seem

phased at the suggestion. Wish I knew who I had talked to.... some

nurse person.

No thats not what he was talking about. He said she likely already

has it mildly and that due to the spacing in her disks he didn't feel

she would have much growth there (her ribcage) at all. Which is why

he felt it would come into play with us possibly very severely. He

doesn't feel that VEPTR or rods would be an option for us at all due

to her very feather like ribs. He said you can't use then when there

is nothing to anchor them to.... makes sense. He said thats why we

would have to talk to Betz or to see about options they may

have (maybe fuse ribs together to get a substantial anchor point,

etc). He had no idea he was just letting us know it may never be an

option at all. He said he isn't the all knowing thats why he wants us

to see Betz or if/when that is our only option or a

consideration.

Geez its all exausting...

Beth

>

> Beth,

>

> That is AWESOME that they are willing to move the table to your

local hospital and do it there. Wow. What can I say? Shriners is

just amazing.

>

> What is the ortho's name? Maybe he was at the ETTP and learned how

to cast there? I have a list of the doctors who attended.

>

> I know that fusing the spine can cause restrictive lung disease and

that is why they are starting to go more towards VEPTR these days. Is

that what he is talking about? Or did he say she already had it

because of how advance her curve is?

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

[Guest guest]

Hi Again

Yes she does. She has Arthrogryposis and possible Escobar Syndrome.

Which includes a form of dwarfism.

She is 29 months and 19 lbs 4 oz, 28 inches long.

Beth

>

> Beth,

>

> Does she have other medical conditions that would cause her to be

smaller? I am assuming that wouldn't be due to scoliosis, right?

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> ----- Original Message -----

[Guest guest]

Thanks Carmell!

This is all speculation anyway. We can't do any of it until she can

be sedated and intubated which seems to currently be our main problem!

Baby steps.... Its so hard waiting!

Beth