Finally home ! :) (Asi & Pooh)

[Guest guest]

We arrived home late last night from a week stay in the hospital for

Asenath (three days for Zipporrah). I am relieved to be home but know we

are still not out of the woods fro Zipporrah. She still doesn't hold down

much food and needs lots of continued hydration. It was a very hard, bad

week filled with so much. We had a major fight to keep Asenath hospitalized

EVEN though she would not wake up for more than a minute or two (with

excruciating pain I might add) until Wednesday late evening. The head

pediatric doc for some absolutely unknown crazy reason was obsessed with

discharging Asenath when she was in no condition to be released. She

couldn't keep anything down, didn't wake, had a terrible migraine (which

turned out to be a stroke), and even after the stroke, he STILL didn't even

care it happened! I was furious and had two separate days where I had to

fight for long periods with this man to keep her in. Thankfully I had a

saint (GI doc) come to the rescue on Thursday evening who said she had to

stay for another couple of days and some residences that treated her despite

this head doc and changed her to glucose water after the IV (with D-10) was

infiltrated, removed, and NOT replaced! Sadly, when she woke on Wednesday

evening and her migraine had gotten much better, we realized she had had a

stroke affecting her left side. She is limping, her left arm/hand is

damaged again, her emotional state is bad, her memory terrible, and worse

her eyes have been damaged! The first two days her eyes both turned inward

toward each other (especially the right compensating for the left we think)

and then yesterday started straightening out, BUT she has been saying since

Wednesday that she can't see. We know she can see some because of things

she can do, but things we have noticed are; walking sideways with her right

eye leading (she turns her head sideways so she can see where she is going

aiming her right eye first), balance disturbances, holds everything to her

right side to look at it, watches tv, etc. with her head turned to look out

the right eye, increased fear of stairs, edges of beds, etc. We are afraid

her left eye may be blind. We have a local ophthalmology appointment

scheduled for Monday morning and hope to know more then. I just hope it is

all temporary but I am trying to be realistic as well. As appalling as

the head doc was at the hospital in trying to discharge her, it was even

worse to see their lack of caring about her eyes. Not ONE doc came to look

at her concerning the issue! No neurologist, eye doc, or other. Finally on

Friday one resident tried to shine a light into her eyes but after trying

approximately 5 seconds with her not cooperating, she gave up. I could not

believe it! I intent to definitely speak to Dr. Whiteman and Asenath's

neuro about the whole situation. They knew what was happening, but I don't

think to the extremity. Our GI said she was going to resolve the issue and

make sure future hospitalizations contain a conference with ALL Asenath and

Zipporrah's major doctors to lay out the plan of action and criteria of

discharge. She also plans to e-mail or personally speak to the docs about

the issues and call our local doc too to make sure it doesn't happen back

here. Due to the negligence of this staff Asenath had no hydration for over

14 hours at her worst period of time, and on Sunday after transferring to

the hospital they drug their feet in getting IV fluid (The IV was already in

from the last hospital!), so she sat in their hospital from 4:30-9:30

without starting any type of fluids. It was a nightmare and made me wonder

if it would be safe to return there! Maybe with the GI's help it will be.

Thankfully Asenath has pulled through this illness (minus MAJOR diarrhea

still), but with new issues.

I want to thank EVERYONE for their prayers, notes of encouragement to

me and Leah who was holding down the home (and family), to Kim Novy who

brought pizza to my family, to who was willing to drive 3 hours to

cheer me up! You all are so precious. This group and our friends and

family are amazing. Thanks you all!

I will try to keep you all updated as to how the girls are doing. It

will be challenging to keep them hydrated here at home, but was really

needing to return and felt it finally ok to hydrate through their G-tubes

rather than IV.

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)