Re: Returned from Mayo (Asenath)

[Guest guest]

Darla:

If you don't already know about it I must recommend that you try to

get into the Mc house. It was an amazing experience

for my family during SUCH a stressful time. We are from Canada and

visited the Mayo over Christmas. Good luck with everything.

e, mom to Abby 10 mos.

> Darla-

>

> Glad your home-I've been wondering how your visit to Mayo went.

Sounds

> like your feeling " mixed " about how it went.

> Hope the Carnitine increase & CoQ help.

>

> Traveling is always difficult & especially with a fragile toddler.

And

> yur going back again soon. Do you travel to the Mayo alone, or with

> someone?Stay with friends or hotel it? Perhaps I can help as we

were also

> there. E mail me direct, maybe I can help. Depending on my

schedule.I

> live only 3 hours north of the Mayo. The invit extends to anyone

else who

> doctors at the Mayo.

>

> Sincerely,

>

> Lee

> Finlayson, MN (just east of Lake Millacs)

> salclerkpinetwn@juno

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

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[Guest guest]

Darla:

If you don't already know about it I must recommend that you try to

get into the Mc house. It was an amazing experience

for my family during SUCH a stressful time. We are from Canada and

visited the Mayo over Christmas. Good luck with everything.

e, mom to Abby 10 mos.

> Darla-

>

> Glad your home-I've been wondering how your visit to Mayo went.

Sounds

> like your feeling " mixed " about how it went.

> Hope the Carnitine increase & CoQ help.

>

> Traveling is always difficult & especially with a fragile toddler.

And

> yur going back again soon. Do you travel to the Mayo alone, or with

> someone?Stay with friends or hotel it? Perhaps I can help as we

were also

> there. E mail me direct, maybe I can help. Depending on my

schedule.I

> live only 3 hours north of the Mayo. The invit extends to anyone

else who

> doctors at the Mayo.

>

> Sincerely,

>

> Lee

> Finlayson, MN (just east of Lake Millacs)

> salclerkpinetwn@juno

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

[Guest guest]

Darla

sorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!

deb

[Guest guest]

Darla

sorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!

deb

[Guest guest]

Darla

sorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!

deb

[Guest guest]

I agree. I am totally ok with not doing the operation right now. It was just weird how they didn't think about the Carnitine withdrawel before they scheduled the operation and had us see the surgeon, etc. I think it also may have had some to do with her swallow study. She gags and repeatedly swallows on soft liquids AT HOME, but during the 5 swallows they tried in front of the doctor and x-ray, she was fine! It can be so frustrating to have her behave one way normally and then a completely different way when it really counts. Even her sleep patterns were better in the hospital! At home she has apnea and weird breathing patterns but in the hospital she slept pretty good. The last two nights she was restless but no weird breathing patterns. I think the doctors expected her to be worse and then when she didn't act the way I told them she acts they did some rethinking on some of the issues, mostly for the G-tube. It just hit us out of no-where. One day they said they WERE going to place the tube (after the swallow study was done) and then the next day everything was cancelled. It was quite a shock as that was the whole purpose of being at Mayo originally and then we didn't do it. I trust Dr. Whiteman's wisdom and definitely am ok with giving more time for the Carnitine to work, but am worried that Asenath will go back to her normal patterns now that we are home. I also want her to eat without being forced to do so on a REGULAR basis, not just sometimes. Overall, I am ok with the plan. We return to Mayo in less than a month anyway and if anything happens before then I am to call, so it all should be ok. Darla: mom to Asenath Re: Returned from Mayo (Asenath) Darlasorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!deb Please contact mito-owner with any problems or questions.

[Guest guest]

I agree. I am totally ok with not doing the operation right now. It was just weird how they didn't think about the Carnitine withdrawel before they scheduled the operation and had us see the surgeon, etc. I think it also may have had some to do with her swallow study. She gags and repeatedly swallows on soft liquids AT HOME, but during the 5 swallows they tried in front of the doctor and x-ray, she was fine! It can be so frustrating to have her behave one way normally and then a completely different way when it really counts. Even her sleep patterns were better in the hospital! At home she has apnea and weird breathing patterns but in the hospital she slept pretty good. The last two nights she was restless but no weird breathing patterns. I think the doctors expected her to be worse and then when she didn't act the way I told them she acts they did some rethinking on some of the issues, mostly for the G-tube. It just hit us out of no-where. One day they said they WERE going to place the tube (after the swallow study was done) and then the next day everything was cancelled. It was quite a shock as that was the whole purpose of being at Mayo originally and then we didn't do it. I trust Dr. Whiteman's wisdom and definitely am ok with giving more time for the Carnitine to work, but am worried that Asenath will go back to her normal patterns now that we are home. I also want her to eat without being forced to do so on a REGULAR basis, not just sometimes. Overall, I am ok with the plan. We return to Mayo in less than a month anyway and if anything happens before then I am to call, so it all should be ok. Darla: mom to Asenath Re: Returned from Mayo (Asenath) Darlasorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!deb Please contact mito-owner with any problems or questions.

[Guest guest]

I agree. I am totally ok with not doing the operation right now. It was just weird how they didn't think about the Carnitine withdrawel before they scheduled the operation and had us see the surgeon, etc. I think it also may have had some to do with her swallow study. She gags and repeatedly swallows on soft liquids AT HOME, but during the 5 swallows they tried in front of the doctor and x-ray, she was fine! It can be so frustrating to have her behave one way normally and then a completely different way when it really counts. Even her sleep patterns were better in the hospital! At home she has apnea and weird breathing patterns but in the hospital she slept pretty good. The last two nights she was restless but no weird breathing patterns. I think the doctors expected her to be worse and then when she didn't act the way I told them she acts they did some rethinking on some of the issues, mostly for the G-tube. It just hit us out of no-where. One day they said they WERE going to place the tube (after the swallow study was done) and then the next day everything was cancelled. It was quite a shock as that was the whole purpose of being at Mayo originally and then we didn't do it. I trust Dr. Whiteman's wisdom and definitely am ok with giving more time for the Carnitine to work, but am worried that Asenath will go back to her normal patterns now that we are home. I also want her to eat without being forced to do so on a REGULAR basis, not just sometimes. Overall, I am ok with the plan. We return to Mayo in less than a month anyway and if anything happens before then I am to call, so it all should be ok. Darla: mom to Asenath Re: Returned from Mayo (Asenath) Darlasorry to hear about all the set-backs with the surgery, but it really sounds like they are giving her good treatment to ensure the best outcome!deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla-

I hope you don't mind, I had a loud haerty chuckle when I read your line

about things going well in front of the docs! Oh do I know that one!

Do you keep a daily journal? Maybe a pattern will emerge.

Hang in there sis!

PS Glad to hear you didn't have to do the whole trip alone- it is so

exhausting! Let me know if you need help in the future. I'd hop in my car

& drive down in a minute if you ever need it.

________________________________________________________________

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[Guest guest]

Darla-

I hope you don't mind, I had a loud haerty chuckle when I read your line

about things going well in front of the docs! Oh do I know that one!

Do you keep a daily journal? Maybe a pattern will emerge.

Hang in there sis!

PS Glad to hear you didn't have to do the whole trip alone- it is so

exhausting! Let me know if you need help in the future. I'd hop in my car

& drive down in a minute if you ever need it.

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Darla-

I hope you don't mind, I had a loud haerty chuckle when I read your line

about things going well in front of the docs! Oh do I know that one!

Do you keep a daily journal? Maybe a pattern will emerge.

Hang in there sis!

PS Glad to hear you didn't have to do the whole trip alone- it is so

exhausting! Let me know if you need help in the future. I'd hop in my car

& drive down in a minute if you ever need it.

________________________________________________________________

Sign Up for Juno Platinum Internet Access Today

Only $9.95 per month!

Visit www.juno.com

[Guest guest]

Darla:

I also know how you feel when the kids act one way and then do

something new for the docs or nurses. Abby seems to take her meds

by syringe for the nurses well but puts on a real gagging fit when I

try. I hope that you find peace through all this frustration.

e, mom to Abby 10 mos.

> I agree. I am totally ok with not doing the operation right

now. It was just weird how they didn't think about the Carnitine

withdrawel before they scheduled the operation and had us see the

surgeon, etc. I think it also may have had some to do with her

swallow study. She gags and repeatedly swallows on soft liquids AT

HOME, but during the 5 swallows they tried in front of the doctor

and x-ray, she was fine! It can be so frustrating to have her

behave one way normally and then a completely different way when it

really counts. Even her sleep patterns were better in the

hospital! At home she has apnea and weird breathing patterns but in

the hospital she slept pretty good. The last two nights she was

restless but no weird breathing patterns. I think the doctors

expected her to be worse and then when she didn't act the way I told

them she acts they did some rethinking on some of the issues, mostly

for the G-tube. It just hit us out of no-where. One day they said

they WERE going to place the tube (after the swallow study was done)

and then the next day everything was cancelled. It was quite a

shock as that was the whole purpose of being at Mayo originally and

then we didn't do it. I trust Dr. Whiteman's wisdom and definitely

am ok with giving more time for the Carnitine to work, but am

worried that Asenath will go back to her normal patterns now that we

are home. I also want her to eat without being forced to do so on a

REGULAR basis, not just sometimes. Overall, I am ok with the plan.

We return to Mayo in less than a month anyway and if anything

happens before then I am to call, so it all should be ok.

>

> Darla: mom to Asenath