Re: Finally home ! :) (Asi & Pooh)

[Guest guest]

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)

[Guest guest]

Darla,

I am so sorry that you and the girls had To go through sooo much!! I hope

and pray with all my heart that they continue on the healing path. Even

though I don't post as often as I should I want you to know that you are all

in my thoughts and prayers, and I do keep up on all the posts to make sure

everyone is doing okay.

When Aspyn was in the hospital at Saint 's also we had so many problems

with the docs listening to us also, I was so mad that with as tired as she

was and the very little energy she had to even eat, when she would finally

fall asleep, a whole group of students and docs would come in and wake her

up. And then on the day she actually crashed, I told the docs over and over

that she was not acting right, and when she did actually crash, the one doc

had the nerve to ask us how long she was acting like this!!! I wish I would

have said more, because Aspyn may still be here, two days after she crashed

is when she passed away. I don't take crap from ANYONE any more, it is so

sad that for all we are going through in the first place that we have to

fight so hard just to convince doctors that there is something wrong, they

should know by now that we parents know more than them!! :-)

I am so happy you are home, please give the girls a big hug for me!!

Gentry's First Birthday is tomorrow, and on Saturday we leave for mayo. I

know that she is just fine, but I am really not looking forward to being

there. I have been shopping for the past 2 months to find little things we

can donate in memory of Aspyn to the RMH for the kids for Christmas...any

ideas??

Well I better run for now, please take care of the girls and yourself!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

Finally home ! (Asi & Pooh)

>

> 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)

>

>

>

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

>

[Guest guest]

{{{{{{{{{{{{{DARLA}}}}}}}}

Will keep you and your family in our prayers.

Darlene

[Guest guest]

:

First of all happy birthday to Gentry. Such a milestone for you all. As

for the Mc House some times they have a wish list of things

needed. I know at the house in Madison new toys; videos, dvd's, etc. May

be a tape player with special music. Or a special book and may be you can

put Aspyns name in it. Or may be do they need plants for the summer time

to spruce up the landscaping. May be you can buy a periennal that will keep

coming back each year. Just a few thoughts. Take care and hope the trip

to Mayo goes smoothly.

Nerenhausen

'mom to Leah

and Wayne wrote:

Darla,

I am so sorry that you and the girls had To go through sooo much!! I hope

and pray with all my heart that they continue on the healing path. Even

though I don't post as often as I should I want you to know that you are all

in my thoughts and prayers, and I do keep up on all the posts to make sure

everyone is doing okay.

When Aspyn was in the hospital at Saint 's also we had so many problems

with the docs listening to us also, I was so mad that with as tired as she

was and the very little energy she had to even eat, when she would finally

fall asleep, a whole group of students and docs would come in and wake her

up. And then on the day she actually crashed, I told the docs over and over

that she was not acting right, and when she did actually crash, the one doc

had the nerve to ask us how long she was acting like this!!! I wish I would

have said more, because Aspyn may still be here, two days after she crashed

is when she passed away. I don't take crap from ANYONE any more, it is so

sad that for all we are going through in the first place that we have to

fight so hard just to convince doctors that there is something wrong, they

should know by now that we parents know more than them!! :-)

I am so happy you are home, please give the girls a big hug for me!!

Gentry's First Birthday is tomorrow, and on Saturday we leave for mayo. I

know that she is just fine, but I am really not looking forward to being

there. I have been shopping for the past 2 months to find little things we

can donate in memory of Aspyn to the RMH for the kids for Christmas...any

ideas??

Well I better run for now, please take care of the girls and yourself!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

Finally home ! (Asi & Pooh)

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)

Please contact mito-owner with any problems or questions.

[Guest guest]

:

First of all happy birthday to Gentry. Such a milestone for you all. As

for the Mc House some times they have a wish list of things

needed. I know at the house in Madison new toys; videos, dvd's, etc. May

be a tape player with special music. Or a special book and may be you can

put Aspyns name in it. Or may be do they need plants for the summer time

to spruce up the landscaping. May be you can buy a periennal that will keep

coming back each year. Just a few thoughts. Take care and hope the trip

to Mayo goes smoothly.

Nerenhausen

'mom to Leah

and Wayne wrote:

Darla,

I am so sorry that you and the girls had To go through sooo much!! I hope

and pray with all my heart that they continue on the healing path. Even

though I don't post as often as I should I want you to know that you are all

in my thoughts and prayers, and I do keep up on all the posts to make sure

everyone is doing okay.

When Aspyn was in the hospital at Saint 's also we had so many problems

with the docs listening to us also, I was so mad that with as tired as she

was and the very little energy she had to even eat, when she would finally

fall asleep, a whole group of students and docs would come in and wake her

up. And then on the day she actually crashed, I told the docs over and over

that she was not acting right, and when she did actually crash, the one doc

had the nerve to ask us how long she was acting like this!!! I wish I would

have said more, because Aspyn may still be here, two days after she crashed

is when she passed away. I don't take crap from ANYONE any more, it is so

sad that for all we are going through in the first place that we have to

fight so hard just to convince doctors that there is something wrong, they

should know by now that we parents know more than them!! :-)

I am so happy you are home, please give the girls a big hug for me!!

Gentry's First Birthday is tomorrow, and on Saturday we leave for mayo. I

know that she is just fine, but I am really not looking forward to being

there. I have been shopping for the past 2 months to find little things we

can donate in memory of Aspyn to the RMH for the kids for Christmas...any

ideas??

Well I better run for now, please take care of the girls and yourself!!

Wayne, , Gentry and ~Angel Aspyn~

www.aspynblock.com

Finally home ! (Asi & Pooh)

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)

Please contact mito-owner with any problems or questions.