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Beth congragulations

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Hi Kelli :)

The hospital we go to for her care is awsome! They gave her nose

drops and then they gave her laughing gas and once she was out they

put in the IV and put her to sleep with IV meds AFTER the tube was

in (thank god). If they had put her straight to sleep with IV meds

and then had a hard time intubating they could have lost her

airway. They did it in this fashion also to learn what she can and

can't tollerate. We now know she can handle the happy juice nose

stuff with no problems (this is how we will have her teeth capped,

she has an enamel deficiency that is likely genetic and needs her

teeth capped when they are fully in). They then used the mask

because often times AMC kids do have a hard time and they felt it

was important for us to know, thankfully she doesn't and in turn

won't need to be awake for IVs, etc. It was all in a very controled

enviroment. She did great for all the medications and the whole

process with the exception of the tube! The surgery was 7.5 hrs

including the 1 hr and 20 minutes to intubate.

Her feet were corrected (we are told). We will *see* them next

Monday at her first cast change. She is in casts until Mid Jan.

The Ortho says they will still point outward a bit, but they will

fit in AFOs and she will be able to walk on them and she should not

need any further surgeries on them. She is beating her casts on

everything and rolling all around. She was even trying to get me to

help her stand today... too bad she isn't allowed yet!

Anyway, thanks for your + thoughts. We go to a clinic for AMC and

there are 30+ AMC kids treated at the clinic each month. We have

gotten to meet quite a few AMC kids at clinic days. The clinic is

in the hos we use. We are thankful they are familiar with AMC :).

I have only met 2 that actually had a problem with mask ventilation

and swallowing their tongue. That seems to be more related to

Pierre Robins Syndrome, but not *always*. They are all so adorable

and different :). s hos pics are at the link below. I will

add a few from today later this evening. :)

*hugs to you and Santi*! :)

Beth

http://home.comcast.net/~kulali/footsurgery.htm

> Hay Beth,

> Congragulations on your first surgery. The feet one is hard and

long, probably lasted 4 hours right? So sorry about the breathing

complication. I was told that with AMC this occurs frequently.

That is why when we do the casting they don´t give Santi a mask they

IV him right there while he is awake. It is a little painful for

about 30 seconds, but then within a minute he is out. I prefer to

be careful doing it this way, the IV is I believe the way they treat

most AMC cases with anesthesia. How did the surgery go? Did they

get good correction? Is wearing casts right now? Let me know

how it all went, I am glad you got that one over with, that is a big

hurdle and you´ve done it... Great job mom...

> Give a big hug from me and Santi,

> Keep strong mom, you´ve done great....

> Kelli and Santiago

>

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Hey Beth were are you guys from?_kulali_@... wrote:

Hi Kelli :)The hospital we go to for her care is awsome! They gave her nose drops and then they gave her laughing gas and once she was out they put in the IV and put her to sleep with IV meds AFTER the tube was in (thank god). If they had put her straight to sleep with IV meds and then had a hard time intubating they could have lost her airway. They did it in this fashion also to learn what she can and can't tollerate. We now know she can handle the happy juice nose stuff with no problems (this is how we will have her teeth capped, she has an enamel deficiency that is likely genetic and needs her teeth capped when they are fully in). They then used the mask because often times AMC kids do have a hard time and they felt it was important for us to know, thankfully she doesn't and in turn

won't need to be awake for IVs, etc. It was all in a very controled enviroment. She did great for all the medications and the whole process with the exception of the tube! The surgery was 7.5 hrs including the 1 hr and 20 minutes to intubate. Her feet were corrected (we are told). We will *see* them next Monday at her first cast change. She is in casts until Mid Jan. The Ortho says they will still point outward a bit, but they will fit in AFOs and she will be able to walk on them and she should not need any further surgeries on them. She is beating her casts on everything and rolling all around. She was even trying to get me to help her stand today... too bad she isn't allowed yet!Anyway, thanks for your + thoughts. We go to a clinic for AMC and there are 30+ AMC kids treated at the clinic each month. We have gotten to meet quite a few AMC kids at clinic

days. The clinic is in the hos we use. We are thankful they are familiar with AMC :). I have only met 2 that actually had a problem with mask ventilation and swallowing their tongue. That seems to be more related to Pierre Robins Syndrome, but not *always*. They are all so adorable and different :). s hos pics are at the link below. I will add a few from today later this evening. :)*hugs to you and Santi*! :)Bethhttp://home.comcast.net/~kulali/footsurgery.htm> Hay Beth, > Congragulations on your first surgery. The feet one is hard and long, probably lasted 4 hours right? So sorry about the breathing complication. I was told that with AMC this occurs frequently. That is why when we

do the casting they don´t give Santi a mask they IV him right there while he is awake. It is a little painful for about 30 seconds, but then within a minute he is out. I prefer to be careful doing it this way, the IV is I believe the way they treat most AMC cases with anesthesia. How did the surgery go? Did they get good correction? Is wearing casts right now? Let me know how it all went, I am glad you got that one over with, that is a big hurdle and you´ve done it... Great job mom...> Give a big hug from me and Santi,> Keep strong mom, you´ve done great....> Kelli and Santiago> __________________________________________________

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