Re: Rosy (from Darla)

[Guest guest]

Glad to hear you made it home safely. It was nice meeting you and

getting to know each other better. It was such a hectic, long trip for us

as well, but it was nice to see you at Mayo, and Kass, and Holly at St.

's Hospital. We too will be returning soon as we had to cancel several

appointments due to the hospital stay. I told the docs I would try to

return within 2-3 weeks if possible and hope to make it a day trip rather

than an overnight/week stay trip this time around.

I was totally surprised that the hospital treated Asenath that way as

well. She couldn't even get pain med for her horrible migraine for the

first several days (when it was at its worst) because as one doc said (and I

quote), " If we gave her anything to control the pain then we wouldn't be

able to tell if she was going to croak! " Talk about shocking!!! How

unprofessional and uncaring can you get, besides being foolish. Can't they

tell if she were getting worse by blood pressure, breathing issues, labs,

heart rate, etc?! I finally got upset and demanded meds and then it was

only Tylenol (which I already had in my purse and could have given her). I

never thought this hospital could be so bad, but it was my first time there

treating a viral issue. In the past we had only went there for

pre-operation IV's, and G-tube/biopsy/nissen operations. All of these

require a preset known amount of time so there is no debating as to them

staying.

I told the head guy I wanted to keep peace, but would NOT tolerate

incompetence for my kids, that it was my responsibility as a mom. After

proving him wrong and having backing from my girls' GI doc, he finally tried

to make amends and be nice, but really it was too late for me to trust him

again, you know.

Sorry to go on like this. I am quite tired, trying to catch up on tons

of stuff, and still irked about the issues discussed above. Keep in touch,

ok?!

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)

Re: Finally home ! (Asi & Pooh)

> so glad to hear you made it home. you were on my mind so much of the time.

> it sounds awful what you guys went thru. it is hard to believe, knowing

> the

> place you were at. i do not understand why your neuro was not available at

> the

> hopital for you and the kids.

>

> we got home on wednesday and all needed time to adjust. it was a long 10

> day

> trip for us. looks like we'll be going back after the holidays.

>

> our best wishes are with you and your family.

>

> rosy, mum to max (5)

>