Maddie update (very long)

April 26, 2005

I want to thank you all for your prayers during what has been the most trying and exhausting week of my life. Maddie was released from the hospital on Sunday, after a 9 day stay. The child we brought home is so very different from the child who was with us before. She is very weak, seems disoriented, although can weakly answer questions with one word. She is unable to support herself, and can barely move her limbs (although it seems she gets a little more strength in that regard daily.) She is now on oxygen 24/7 because she can't keep her saturation level up. I am still confused about what happened to her, and haven't received any of the reports yet to try to put things together. The hospital experience itself was frustrating because nobody here seems to know what to do for Maddie, and she isn't a "typical" child.

Maddie was sick with a chest cold (a very bad one) the week before she was hospitalized. She had been coughing day and night nonstop for at least 3 days. She had become very lethargic, and when I took her to her Ped. the Thurs. before she was hospitalized, her ped. just gave her Zithromax to prevent a bacterial infection, as Maddie had spiked a fever the night before. She didn't hear anything in her lungs. The next day I was giving her a drink of water and she just seemed to collapse- she turned gray and I called 911. By the time the paramedics had arrived she was somewhat more alert, and they gave her blow-by oxygen. Her pulse rate was 159, and the recommended taking her to the hospital. After observing her for an hour we took her in, and they started IV fluids and took a chest x-ray. The x-ray showed that her heart and lungs were enlarged, and her left lung was partially collapsed. Her C02 level at that time was 60. (Normal person is about 40 or so.) After doing an echo of her heart they discovered some thickening, but the cardiologist said it was not attributed to the virus. This was new information to us, and something we need to have looked at further once she is better. She was monitored and given blow-by o2 Friday night, but by Saturday she was on Bi-pap, and by Saturday night they put her on a ventilator because she just wasn't able to move the Co2 out of her sytem. She was given Fentanyl and Versed while intubated, and I'm not sure if those drugs can have any long-term effects on someone with mito. The removed the vent on Tuesday, and it took her several days to regulate her breathing. (She is still breathing somewhat rapidly) She was on large amounts of blow-by 02 the entire time. Her C02 levels remained very elevated, but she was somewhat alert and able to eat- she is still starving. They gave her nothing the first day she was there, although my husband and I adamantly asked them to give her something via her IV. After consulting with one of the mito docs here (who really knows nothing about Maddie) the finally began giving her lipids, then placed an NG tube while she was intubated and gave her kindercal. After she was extubated they gave her NOTHING but dextrose IV for 2 DAYS, despite our pleading that she needed to have SOMETHING. Once she began eating orally she hasn't stopped, and I thank God that she is still able to do that. Drinking is another story, and while she will drink some, I'm having to syringe her fluids again.

We were apprehensive about bringing her home in this condition- we have gone from having an ambulatory, speaking (in her own way) child to one who is completely dependent on us, not the same neurologically, and is extremely fatigued. I'm hoping it is fatigue, after all that her little body has been through the past 2 weeks. I'm trying to mentally prepare myself for it not being fatigue, we have ordered a pediatric wheelchair- just something simple for now, and if we need something long-term, we'll cross that bridge when we get there I guess. It is just heartbreaking for me to see her like this, after she has worked so hard these past 6 years to acquire the skills she did have, just to have them wiped out in a matter of days. Have any of you had any similar experiences as this, whether the outcome was good or bad, I really need some input as to what we may need to expect. How long should I give her to try to get back to her normal baseline before beginning all of the testing that needs to be done (sleep study, swallow study, GI, etc.) I guess my biggest question (that will only be answered with time) is, is what we are seeing effects from illness and mito, the extremely high co2 levels, or possibly side effects from the medications she was given...? The pulmonologist has tentatively gone over many things with us that we may need to look into, including a trach. We will probably have a g-tube placed once she is well enough. Any info on the heart issues is appreciated. When she was discharged her x-ray looked good, but the thickening is probably due to the mito.

Sorry this is so long, I just needed to let it out in order for what has happened to become a little more real to me. For the first time I realistically was able to see that this disease may very well take her from us- something I have been in denial about for 6 years. You all are the experts in my opinion, and any insight you may have is much appreciated. If I've missed anything please ask me questions- the more I can try to put together with your help the better. Once again, thank you for your prayers....please continue to pray for Maddie.

Holly Rubio

April 26, 2005

Holly- You are all in my prayers. You must be exhausted. Try to get

some rest. I know easier said then done, but maybe then things may

seem a little clearer.

Geri-Anne and Wyatt, Complex I

caringbridge.org/mn/wyattc

-- In Mito , " Holly Rubio " <hrubio6@m...> wrote:

> I want to thank you all for your prayers during what has been the

most trying and exhausting week of my life. Maddie was released from

the hospital on Sunday, after a 9 day stay. The child we brought home

is so very different from the child who was with us before. She is

very weak, seems disoriented, although can weakly answer questions

with one word. She is unable to support herself, and can barely move

her limbs (although it seems she gets a little more strength in that

regard daily.) She is now on oxygen 24/7 because she can't keep her

saturation level up. I am still confused about what happened to her,

and haven't received any of the reports yet to try to put things

together. The hospital experience itself was frustrating because

nobody here seems to know what to do for Maddie, and she isn't a

" typical " child.

>

> Maddie was sick with a chest cold (a very bad one) the week before

she was hospitalized. She had been coughing day and night nonstop for

at least 3 days. She had become very lethargic, and when I took her

to her Ped. the Thurs. before she was hospitalized, her ped. just gave

her Zithromax to prevent a bacterial infection, as Maddie had spiked a

fever the night before. She didn't hear anything in her lungs. The

next day I was giving her a drink of water and she just seemed to

collapse- she turned gray and I called 911. By the time the

paramedics had arrived she was somewhat more alert, and they gave her

blow-by oxygen. Her pulse rate was 159, and the recommended taking

her to the hospital. After observing her for an hour we took her in,

and they started IV fluids and took a chest x-ray. The x-ray showed

that her heart and lungs were enlarged, and her left lung was

partially collapsed. Her C02 level at that time was 60. (Normal

person is about 40 or so.) After doing an echo of her heart they

discovered some thickening, but the cardiologist said it was not

attributed to the virus. This was new information to us, and

something we need to have looked at further once she is better. She

was monitored and given blow-by o2 Friday night, but by Saturday she

was on Bi-pap, and by Saturday night they put her on a ventilator

because she just wasn't able to move the Co2 out of her sytem. She

was given Fentanyl and Versed while intubated, and I'm not sure if

those drugs can have any long-term effects on someone with mito. The

removed the vent on Tuesday, and it took her several days to regulate

her breathing. (She is still breathing somewhat rapidly) She was on

large amounts of blow-by 02 the entire time. Her C02 levels remained

very elevated, but she was somewhat alert and able to eat- she is

still starving. They gave her nothing the first day she was there,

although my husband and I adamantly asked them to give her something

via her IV. After consulting with one of the mito docs here (who

really knows nothing about Maddie) the finally began giving her

lipids, then placed an NG tube while she was intubated and gave her

kindercal. After she was extubated they gave her NOTHING but dextrose

IV for 2 DAYS, despite our pleading that she needed to have SOMETHING.

Once she began eating orally she hasn't stopped, and I thank God that

she is still able to do that. Drinking is another story, and while

she will drink some, I'm having to syringe her fluids again.

>

> We were apprehensive about bringing her home in this condition- we

have gone from having an ambulatory, speaking (in her own way) child

to one who is completely dependent on us, not the same neurologically,

and is extremely fatigued. I'm hoping it is fatigue, after all that

her little body has been through the past 2 weeks. I'm trying to

mentally prepare myself for it not being fatigue, we have ordered a

pediatric wheelchair- just something simple for now, and if we need

something long-term, we'll cross that bridge when we get there I

guess. It is just heartbreaking for me to see her like this, after

she has worked so hard these past 6 years to acquire the skills she

did have, just to have them wiped out in a matter of days. Have any

of you had any similar experiences as this, whether the outcome was

good or bad, I really need some input as to what we may need to

expect. How long should I give her to try to get back to her normal

baseline before beginning all of the testing that needs to be done

(sleep study, swallow study, GI, etc.) I guess my biggest question

(that will only be answered with time) is, is what we are seeing

effects from illness and mito, the extremely high co2 levels, or

possibly side effects from the medications she was given...? The

pulmonologist has tentatively gone over many things with us that we

may need to look into, including a trach. We will probably have a

g-tube placed once she is well enough. Any info on the heart issues

is appreciated. When she was discharged her x-ray looked good, but

the thickening is probably due to the mito.

>

> Sorry this is so long, I just needed to let it out in order for what

has happened to become a little more real to me. For the first time I

realistically was able to see that this disease may very well take her

from us- something I have been in denial about for 6 years. You all

are the experts in my opinion, and any insight you may have is much

appreciated. If I've missed anything please ask me questions- the

more I can try to put together with your help the better. Once again,

thank you for your prayers....please continue to pray for Maddie.

>

> Holly Rubio

April 26, 2005

Oh Holly, what a nightmare youve all been through! Im so sorry she

took such a dive, I hope the effects your seeing now are a result of

the meds and CO2 levels and will continue to improve...

I know after s biggest crash, it took him a while to bounce

back, but after being home a few weeks and getting real rest (they

cant really rest in hospital) he did slowly return to the boy i had

before he got sick... i hope Maddie does too.

I dont know much about the things you talked about, so I dont have

much advice, but i wanted to offer (((hugs))) and let you know

Maddie is in our prayers!

Keely, mom to (complex 1) and Tyler (so far so good)

> I want to thank you all for your prayers during what has been the

most trying and exhausting week of my life. Maddie was released

from the hospital on Sunday, after a 9 day stay. The child we

brought home is so very different from the child who was with us

before. She is very weak, seems disoriented, although can weakly

answer questions with one word. She is unable to support herself,

and can barely move her limbs (although it seems she gets a little

more strength in that regard daily.) She is now on oxygen 24/7

because she can't keep her saturation level up. I am still confused

about what happened to her, and haven't received any of the reports

yet to try to put things together. The hospital experience itself

was frustrating because nobody here seems to know what to do for

Maddie, and she isn't a " typical " child.

>

> Maddie was sick with a chest cold (a very bad one) the week before

she was hospitalized. She had been coughing day and night nonstop

for at least 3 days. She had become very lethargic, and when I took

her to her Ped. the Thurs. before she was hospitalized, her ped.

just gave her Zithromax to prevent a bacterial infection, as Maddie

had spiked a fever the night before. She didn't hear anything in

her lungs. The next day I was giving her a drink of water and she

just seemed to collapse- she turned gray and I called 911. By the

time the paramedics had arrived she was somewhat more alert, and

they gave her blow-by oxygen. Her pulse rate was 159, and the

recommended taking her to the hospital. After observing her for an

hour we took her in, and they started IV fluids and took a chest x-

ray. The x-ray showed that her heart and lungs were enlarged, and

her left lung was partially collapsed. Her C02 level at that time

was 60. (Normal person is about 40 or so.) After doing an echo of

her heart they discovered some thickening, but the cardiologist said

it was not attributed to the virus. This was new information to us,

and something we need to have looked at further once she is better.

She was monitored and given blow-by o2 Friday night, but by Saturday

she was on Bi-pap, and by Saturday night they put her on a

ventilator because she just wasn't able to move the Co2 out of her

sytem. She was given Fentanyl and Versed while intubated, and I'm

not sure if those drugs can have any long-term effects on someone

with mito. The removed the vent on Tuesday, and it took her several

days to regulate her breathing. (She is still breathing somewhat

rapidly) She was on large amounts of blow-by 02 the entire time.

Her C02 levels remained very elevated, but she was somewhat alert

and able to eat- she is still starving. They gave her nothing the

first day she was there, although my husband and I adamantly asked

them to give her something via her IV. After consulting with one of

the mito docs here (who really knows nothing about Maddie) the

finally began giving her lipids, then placed an NG tube while she

was intubated and gave her kindercal. After she was extubated they

gave her NOTHING but dextrose IV for 2 DAYS, despite our pleading

that she needed to have SOMETHING. Once she began eating orally she

hasn't stopped, and I thank God that she is still able to do that.

Drinking is another story, and while she will drink some, I'm having

to syringe her fluids again.

>

> We were apprehensive about bringing her home in this condition- we

have gone from having an ambulatory, speaking (in her own way) child

to one who is completely dependent on us, not the same

neurologically, and is extremely fatigued. I'm hoping it is

fatigue, after all that her little body has been through the past 2

weeks. I'm trying to mentally prepare myself for it not being

fatigue, we have ordered a pediatric wheelchair- just something

simple for now, and if we need something long-term, we'll cross that

bridge when we get there I guess. It is just heartbreaking for me

to see her like this, after she has worked so hard these past 6

years to acquire the skills she did have, just to have them wiped

out in a matter of days. Have any of you had any similar

experiences as this, whether the outcome was good or bad, I really

need some input as to what we may need to expect. How long should I

give her to try to get back to her normal baseline before beginning

all of the testing that needs to be done (sleep study, swallow

study, GI, etc.) I guess my biggest question (that will only be

answered with time) is, is what we are seeing effects from illness

and mito, the extremely high co2 levels, or possibly side effects

from the medications she was given...? The pulmonologist has

tentatively gone over many things with us that we may need to look

into, including a trach. We will probably have a g-tube placed once

she is well enough. Any info on the heart issues is appreciated.

When she was discharged her x-ray looked good, but the thickening is

probably due to the mito.

>

> Sorry this is so long, I just needed to let it out in order for

what has happened to become a little more real to me. For the first

time I realistically was able to see that this disease may very well

take her from us- something I have been in denial about for 6

years. You all are the experts in my opinion, and any insight you

may have is much appreciated. If I've missed anything please ask me

questions- the more I can try to put together with your help the

better. Once again, thank you for your prayers....please continue

to pray for Maddie.

>

> Holly Rubio

April 26, 2005

Dear Hollie,

I am so sorry and I will pray. I know

how horrible it is to watch your child lose so much and become a different

child completely. I went through it twice and never came home from the hospital

when things got that bad. I am very glad Maddie was able to come home and I am

praying that is is a matter of time for good recovery. I do not have any advice

to offer except that I hate this evil disease so much and it breaks my heart so

much to see what it does to our children.I just want to offer my support and

prayers even though I have little energy to give these days because I have a

double broken heart.

May God grant you strength and

healing.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna (died 3-20-05)

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Mito [mailto:Mito ]

On Behalf Of Holly Rubio

Sent: Tuesday, April 26, 2005

10:34 AM

To: Mito; mito

Subject: Maddie update (very long)

I want to thank you

all for your prayers during what has been the most trying and exhausting week

of my life. Maddie was released from the hospital on Sunday, after a 9

day stay. The child we brought home is so very different from the child who

was with us before. She is very weak, seems disoriented, although can

weakly answer questions with one word. She is unable to support herself,

and can barely move her limbs (although it seems she gets a little more

strength in that regard daily.) She is now on oxygen 24/7 because she

can't keep her saturation level up. I am still confused about what

happened to her, and haven't received any of the reports yet to try to put

things together. The hospital experience itself was frustrating because

nobody here seems to know what to do for Maddie, and she isn't a

" typical " child.

Maddie was sick with a

chest cold (a very bad one) the week before she was hospitalized. She had

been coughing day and night nonstop for at least 3 days. She had become

very lethargic, and when I took her to her Ped. the Thurs. before she was

hospitalized, her ped. just gave her Zithromax to prevent a bacterial

infection, as Maddie had spiked a fever the night before. She didn't hear

anything in her lungs. The next day I was giving her a drink of water and

she just seemed to collapse- she turned gray and I called 911. By the

time the paramedics had arrived she was somewhat more alert, and they gave her

blow-by oxygen. Her pulse rate was 159, and the recommended taking her to

the hospital. After observing her for an hour we took her in, and they

started IV fluids and took a chest x-ray. The x-ray showed that her heart

and lungs were enlarged, and her left lung was partially collapsed. Her

C02 level at that time was 60. (Normal person is about 40 or so.) After

doing an echo of her heart they discovered some thickening, but the

cardiologist said it was not attributed to the virus. This was new

information to us, and something we need to have looked at further once she is

better. She was monitored and given blow-by o2 Friday night, but by

Saturday she was on Bi-pap, and by Saturday night they put her on a ventilator

because she just wasn't able to move the Co2 out of her sytem. She was

given Fentanyl and Versed while intubated, and I'm not sure if those drugs can

have any long-term effects on someone with mito. The removed the vent on Tuesday,

and it took her several days to regulate her breathing. (She is still

breathing somewhat rapidly) She was on large amounts of blow-by 02 the

entire time. Her C02 levels remained very elevated, but she was somewhat

alert and able to eat- she is still starving. They gave her nothing the

first day she was there, although my husband and I adamantly asked them to give

her something via her IV. After consulting with one of the mito docs here (who

really knows nothing about Maddie) the finally began giving her lipids, then

placed an NG tube while she was intubated and gave her kindercal. After

she was extubated they gave her NOTHING but dextrose IV for 2 DAYS, despite our

pleading that she needed to have SOMETHING. Once she began eating orally

she hasn't stopped, and I thank God that she is still able to do that.

Drinking is another story, and while she will drink some, I'm having to syringe

her fluids again.

We were apprehensive

about bringing her home in this condition- we have gone from having an

ambulatory, speaking (in her own way) child to one who is completely dependent

on us, not the same neurologically, and is extremely fatigued. I'm hoping

it is fatigue, after all that her little body has been through the past 2

weeks. I'm trying to mentally prepare myself for it not being fatigue, we

have ordered a pediatric wheelchair- just something simple for now, and if we

need something long-term, we'll cross that bridge when we get there I

guess. It is just heartbreaking for me to see her like this, after she

has worked so hard these past 6 years to acquire the skills she did have, just

to have them wiped out in a matter of days. Have any of you had any

similar experiences as this, whether the outcome was good or bad, I really need

some input as to what we may need to expect. How long should I give her

to try to get back to her normal baseline before beginning all of the testing

that needs to be done (sleep study, swallow study, GI, etc.) I guess my

biggest question (that will only be answered with time) is, is what we are

seeing effects from illness and mito,

the extremely high co2 levels, or possibly side effects from the medications

she was given...? The pulmonologist has tentatively gone over many things

with us that we may need to look into, including a trach. We will

probably have a g-tube placed once she is well enough. Any info on the heart

issues is appreciated. When she was discharged her x-ray looked

good, but the thickening is probably due to the mito.

Sorry this is so long,

I just needed to let it out in order for what has happened to become a little

more real to me. For the first time I realistically was able to see that

this disease may very well take her from us- something I have been in denial

about for 6 years. You all are the experts in my opinion, and any insight

you may have is much appreciated. If I've missed anything please ask me questions-

the more I can try to put together with your help the better. Once again,

thank you for your prayers....please continue to pray for Maddie.

Holly Rubio

Please contact mito-owner

with any problems or questions.

April 26, 2005

I really don't have any good advice, sorry. Just wanted to let you know I am praying for a full recovery for Maddie.

With MSN Hotmail, you get powerful spam filters and enhanced virus scanning cleaning.

April 26, 2005

Holly

I am glad to hear you and Maddie are home. Reading your note is like looking into a mirror. We went through this with Max last September. And yes, since last October she is the proud owner of a powerchair. We had to adjust to what we like to refer to as a new kind of normal.

Max got a bi-pap and a pulse oximeter as well as an oxygen concentrator upon release from the hospital. Next month she will go on a vent. During the day we will try non-invasive IPPV (Dr. Bach's method). They talked about an trach and we are hoping we will have some time ....

Her heart rate is all over the map, for lack of better term. she has brady as well as tachycardia. No one seems to know and understand why her body does the things it does and when.

Currently we are also using a bi-pap mid day for about an hour. It does help. You may want to try that. Max has a 50 foot cord attached to the oxygen concentrator which allows her to move about the house freely.

I hope Maddie will continue to improve. It will take time. She has been through a lot. Hang in there. Our best wishes for all of you

rosy, mom to max , nearly 6

It truly took Max months to come back to nearly where she was prior to her illness. Her energy spurts are short lived. She tires soooo easily now. She looks a lot better. She does great compared to September/Ocotber last year.

April 26, 2005

I am sorry to hear how badly Maddie has been doing. I am sure it is

nice to be coming home and yet it is hard having her not the same as before.

I can understand what you are going through somewhat as we went through

several experiences in the past similar to what is happening with Maddie.

When Asenath had a stroke paralyzing her entire left side we wondered if she

would ever be able to sit up alone again, speak normally again, walk, use

her left arm/hand, etc. We were fortunate that with lots of hard work and

time she was able to regain most of the use of her body. We also have went

through the same experience with Zipporrah (to a lesser degree) a couple

times and Asenath many times where she would have major set backs and each

time we wondered if this would be the time she wouldn't regain things. She

is cognitively delayed and has different issues from the strokes as does

Zipporrah, but we have felt blessed that they are doing as well as they are

concerning what they have been through and what we could be dealing with.

My heart goes out to you and your daughter and I hope and pray that she too

will regain what she has lost in time. Please keep us updated as to how she

is doing. Thank you for sharing.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian artery, disautonomia, hypertonicity, migraines, possible

seizures, dumping syndrome, iron deficiency...

Luke (16) migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(16 months) SID, dev. delays, right hemiparesis issues...

Maddie update (very long)

I want to thank you all for your prayers during what has been the most

trying and exhausting week of my life. Maddie was released from the

hospital on Sunday, after a 9 day stay. The child we brought home is so

very different from the child who was with us before. She is very weak,

seems disoriented, although can weakly answer questions with one word. She

is unable to support herself, and can barely move her limbs (although it

seems she gets a little more strength in that regard daily.) She is now on

oxygen 24/7 because she can't keep her saturation level up. I am still

confused about what happened to her, and haven't received any of the reports

yet to try to put things together. The hospital experience itself was

frustrating because nobody here seems to know what to do for Maddie, and she

isn't a " typical " child.

Maddie was sick with a chest cold (a very bad one) the week before she was

hospitalized. She had been coughing day and night nonstop for at least 3

days. She had become very lethargic, and when I took her to her Ped. the

Thurs. before she was hospitalized, her ped. just gave her Zithromax to

prevent a bacterial infection, as Maddie had spiked a fever the night

before. She didn't hear anything in her lungs. The next day I was giving

her a drink of water and she just seemed to collapse- she turned gray and I

called 911. By the time the paramedics had arrived she was somewhat more

alert, and they gave her blow-by oxygen. Her pulse rate was 159, and the

recommended taking her to the hospital. After observing her for an hour we

took her in, and they started IV fluids and took a chest x-ray. The x-ray

showed that her heart and lungs were enlarged, and her left lung was

partially collapsed. Her C02 level at that time was 60. (Normal person is

about 40 or so.) After doing an echo of her heart they discovered some

thickening, but the cardiologist said it was not attributed to the virus.

This was new information to us, and something we need to have looked at

further once she is better. She was monitored and given blow-by o2 Friday

night, but by Saturday she was on Bi-pap, and by Saturday night they put her

on a ventilator because she just wasn't able to move the Co2 out of her

sytem. She was given Fentanyl and Versed while intubated, and I'm not sure

if those drugs can have any long-term effects on someone with mito. The

removed the vent on Tuesday, and it took her several days to regulate her

breathing. (She is still breathing somewhat rapidly) She was on large

amounts of blow-by 02 the entire time. Her C02 levels remained very

elevated, but she was somewhat alert and able to eat- she is still starving.

They gave her nothing the first day she was there, although my husband and I

adamantly asked them to give her something via her IV. After consulting

with one of the mito docs here (who really knows nothing about Maddie) the

finally began giving her lipids, then placed an NG tube while she was

intubated and gave her kindercal. After she was extubated they gave her

NOTHING but dextrose IV for 2 DAYS, despite our pleading that she needed to

have SOMETHING. Once she began eating orally she hasn't stopped, and I

thank God that she is still able to do that. Drinking is another story, and

while she will drink some, I'm having to syringe her fluids again.

We were apprehensive about bringing her home in this condition- we have gone

from having an ambulatory, speaking (in her own way) child to one who is

completely dependent on us, not the same neurologically, and is extremely

fatigued. I'm hoping it is fatigue, after all that her little body has been

through the past 2 weeks. I'm trying to mentally prepare myself for it not

being fatigue, we have ordered a pediatric wheelchair- just something simple

for now, and if we need something long-term, we'll cross that bridge when we

get there I guess. It is just heartbreaking for me to see her like this,

after she has worked so hard these past 6 years to acquire the skills she

did have, just to have them wiped out in a matter of days. Have any of you

had any similar experiences as this, whether the outcome was good or bad, I

really need some input as to what we may need to expect. How long should I

give her to try to get back to her normal baseline before beginning all of

the testing that needs to be done (sleep study, swallow study, GI, etc.) I

guess my biggest question (that will only be answered with time) is, is what

we are seeing effects from illness and mito, the extremely high co2 levels,

or possibly side effects from the medications she was given...? The

pulmonologist has tentatively gone over many things with us that we may need

to look into, including a trach. We will probably have a g-tube placed once

she is well enough. Any info on the heart issues is appreciated. When she

was discharged her x-ray looked good, but the thickening is probably due to

the mito.

Sorry this is so long, I just needed to let it out in order for what has

happened to become a little more real to me. For the first time I

realistically was able to see that this disease may very well take her from

us- something I have been in denial about for 6 years. You all are the

experts in my opinion, and any insight you may have is much appreciated. If

I've missed anything please ask me questions- the more I can try to put

together with your help the better. Once again, thank you for your

prayers....please continue to pray for Maddie.

Holly Rubio

April 27, 2005

Holly,

I have no great words of wisdom. I just wanted to let you know that Maddie is in our prayers . I hope the fatigue is just that,,and nothing more. I am so sorry to hear about your long horrible ordeal. BTW,,how old is Maddie ?Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY__________________________________________________

April 27, 2005

Dear Holly,

My 10 yr. old daughter, Nichole, has NARP mito with the T8993G

mutation. Your expereince with Maddy has also happened to Nichole

before except without the oxygen. Sometimes it has taken as long aS

6 months for nichole to even sit up again after she has had a major

regression. The eatting is always difficult to regain again as well

especially the liquids.

We just don't push Nichole when she has a regression. We just

make sure we give her excercises that we administer ourselves. The

rest will just take a long time and I know what you mean by her not

seeming like the same person. Just remember she has been through so

much mentally and physically.

Best of luck with her recovery,

Kim

> I want to thank you all for your prayers during what has been the

most trying and exhausting week of my life. Maddie was released from

the hospital on Sunday, after a 9 day stay. The child we brought

home is so very different from the child who was with us before. She

is very weak, seems disoriented, although can weakly answer questions

with one word. She is unable to support herself, and can barely move

her limbs (although it seems she gets a little more strength in that

regard daily.) She is now on oxygen 24/7 because she can't keep her

saturation level up. I am still confused about what happened to her,

and haven't received any of the reports yet to try to put things

together. The hospital experience itself was frustrating because

nobody here seems to know what to do for Maddie, and she isn't

a " typical " child.

>

> Maddie was sick with a chest cold (a very bad one) the week before

she was hospitalized. She had been coughing day and night nonstop

for at least 3 days. She had become very lethargic, and when I took

her to her Ped. the Thurs. before she was hospitalized, her ped. just

gave her Zithromax to prevent a bacterial infection, as Maddie had

spiked a fever the night before. She didn't hear anything in her

lungs. The next day I was giving her a drink of water and she just

seemed to collapse- she turned gray and I called 911. By the time

the paramedics had arrived she was somewhat more alert, and they gave

her blow-by oxygen. Her pulse rate was 159, and the recommended

taking her to the hospital. After observing her for an hour we took

her in, and they started IV fluids and took a chest x-ray. The x-ray