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to darla klein

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hi my name is lisa and i have a 5 year old with complex IV like you

we spend a lot of time in hospitals and we see dr whiteman too

anyway on one of your last post you spoke of your challenging visit

at a hospital i don't know where you live, however, we go to

children's minneapolis and i have always been pleased our stays

average 11 days and i am ready to leave before the dr's want to

discharge us my daughter is a " hard poke " so anesthesia has to

come. for the most part i have had very little problems with the er

staff, drs, and nurses. we work with partner's in peds dr kuperman--

who is awesome, dr ferenci ped gi, dr breningstahl ped neuro, dr rich

surgeon her iv is usually started in the er and then the partner's

in peds dr rounding in the hospital admits us and he or she is the

one who consults with family, kuperman and other dr to decide on

discharge i could go on and on post or email me if i can help

lisa ehele

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St. 's Hospital ER has always been fine and my girls are hard sticks as

well so we use the flight crew (PIC-U)so that too has been fine. We have

only had this one time where we have had trouble but have heard of others

leaving too soon and needing to come back and wonder how much of a problem

it is there. The nurses told me they had plenty of open rooms so why he was

in such a rush we have no idea. Overall, I still would rather go to this

hospital because our major docs are at Mayo and with Asenath's rare issues,

we need to be somewhere that knows about them and knows how to treat them.

Unfortunately this particular doc just didn't take it seriously, but I think

he will rethink things next time around! Our GI will make sure things go

fine. Thanks for your note though. :)

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

to darla klein

>

>

> hi my name is lisa and i have a 5 year old with complex IV like you

> we spend a lot of time in hospitals and we see dr whiteman too

> anyway on one of your last post you spoke of your challenging visit

> at a hospital i don't know where you live, however, we go to

> children's minneapolis and i have always been pleased our stays

> average 11 days and i am ready to leave before the dr's want to

> discharge us my daughter is a " hard poke " so anesthesia has to

> come. for the most part i have had very little problems with the er

> staff, drs, and nurses. we work with partner's in peds dr kuperman--

> who is awesome, dr ferenci ped gi, dr breningstahl ped neuro, dr rich

> surgeon her iv is usually started in the er and then the partner's

> in peds dr rounding in the hospital admits us and he or she is the

> one who consults with family, kuperman and other dr to decide on

> discharge i could go on and on post or email me if i can help

> lisa ehele

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

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