Hospitalization due to vomiting and diarehea.

[Guest guest]

Debbi,

I will pray for and for you. Know that we all care and will be praying for him. I know that the prayers are what have gotten us through this far with Audrey. Keep us updated as you are able.

Thinking and praying for you,

Kathy, grandma to Audrey, 33 mos

[Guest guest]

We just got out of the hospital. has been having diahrea and

vomiting for about 4 weeks. we had him in the clinic for iv fluids

and iv meds for 6 or 7 hours and ended up in the er two days later.

transfered to another hospital and then to another. We ended up in

and white for 10 days. His blood pressure was extremely high

and the diahrea and vomiting did not stop. He had test after test to

no avail. We finally left after vomiting 28 oz. and no oral intake.

We are at our " ropes end " They put in a " j " tube along with the g

tube and he seemed to be doing fine.(after comming home.) Then after

a week has started with the vomiting and diarhea again. We don't

know what to do at this point. He has also had some pitting edema.

In his eyes, hands, feet, and legs. His stomach is so swollen, and

he is visibly uncomfortable. Sometimes I wish he wasn't so

cognitively aware. is sick. He wonders if God can come

here. I really do not know what to tell him. I am afraid of what he

really wants to know. I do say he is all around us, but can he

understand that? Sometimes I wonder myself...

Debbi

[Guest guest]

Dear Debbi, Did they treat him for Cyclical Vomitting? I'll pray for and pray that you have the strength to go on and the words to say. My Ben, too, asks hard questions.Cindy Cruz, mom to Seth 13 and Ben 8, both mito

Hospitalization due to vomiting and diarehea.

We just got out of the hospital. has been having diahrea and vomiting for about 4 weeks. we had him in the clinic for iv fluids and iv meds for 6 or 7 hours and ended up in the er two days later. transfered to another hospital and then to another. We ended up in and white for 10 days. His blood pressure was extremely high and the diahrea and vomiting did not stop. He had test after test to no avail. We finally left after vomiting 28 oz. and no oral intake. We are at our "ropes end" They put in a "j" tube along with the g tube and he seemed to be doing fine.(after comming home.) Then after a week has started with the vomiting and diarhea again. We don't know what to do at this point. He has also had some pitting edema. In his eyes, hands, feet, and legs. His stomach is so swollen, and he is visibly uncomfortable. Sometimes I wish he wasn't so cognitively aware. is sick. He wonders if God can come here. I really do not know what to tell him. I am afraid of what he really wants to know. I do say he is all around us, but can he understand that? Sometimes I wonder myself...Debbi

[Guest guest]

> Debbi,

>

> I will pray for and for you. Know that we all care and

will be

> praying for him. I know that the prayers are what have gotten us

through this far

> with Audrey. Keep us updated as you are able.

>

> Thinking and praying for you,

> Kathy, grandma to Audrey, 33 mos

Kathy,

Thank you for your prayers, I am sorry it took so long to reply. We

have been through many things since me last entry. actually

threw up his jtube beleive it or not. We replaced it with his

regular gtube and headed to Austin, a two hour trip to our gastro

guy. We oppted to just leave things the way they were and not put

under again. The vomiting has subsided, still a little

diarhea. We are now on Hospice. I will write more soon, as soon as

I can figure out how to use this web page.

Praying for you all as well,

Debbi Beck

[Guest guest]

Debbi,

I am glad to hear is home. As for the Hospice, Audrey has been with Hospice for over a year now. They are wonderful. It was a hard decision to go with Hospice as people always think the worst is about to happen. For Audrey it has been a real help and it is considered for of Palliative (SP) care. They are there for all kinds of support, pastorial services, counceling services, medicines are supplied, diapers, and just about anything Audrey needs is taken care of. For children it works a bit differently than for adults, especially children with mito.

Unfortunately right now Audrey is not doing very well. She has another virus, what the docs are saying is hand, foot and mouth disease. She is also having diarrhea and vomiting with it plus a fever. Last year Dr. Cohen didn't think she would be with us for her second birthday, but on the 10th she will be three. Amie doesn't say much, but she always gets very worried around her birthday. She called and wanted me to come down tonight for a while so of course I went right away. Amie is having a really hard time right now and is very scared. I don't now what to say to her when she cries, she just wants her baby to be normal, and of course we all know the answer to that. My heart breaks for them and for me as well. I try not to cry when I am with Amie, but sometimes I can't help it, so, we just sit and cry together. Audrey is getting so weak and she seems to get a virus every other week. She gets over one and then another one appears, and after each one she is even weaker. Her smiles are still there but sometimes you can see it only in her eyes. Please say a few extra prayers for Audrey tonight as I will for your sweet .

Please keep me updated, if you would like to email me privately that would be fine as well.

Praying for all,

Kathy, grandma to Audrey, soon to be 3 years on the 10th!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

[Guest guest]

We will also be praying for Audry, your daughter (and her whole family)

and for you. I know how scary viruses can be for our kids and especially

when they seem so weak and affected by them. Sometimes is is good for you

to cry with your daughter. She needs to see how much you care as well as

how strong you are for them. I am sure she treasures those tear filled

times where she is near to you knowing you hurt as much as she does. Don't

feel bad about it. We are human and crying is a part of how God made us to

respond to sadness. We will keep praying.

Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,

seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma

Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,

disautonomy, hypo & hypertonicity, migraines

>From: Dklboone@...

>Reply-To: Mito

>To: Mito

>Subject: Re: Re: Hospitalization due to vomiting and diarehea.

>Date: Thu, 5 Aug 2004 00:29:31 EDT

>

>Debbi,

>

>I am glad to hear is home. As for the Hospice, Audrey has been

>with

>Hospice for over a year now. They are wonderful. It was a hard decision

>to

>go with Hospice as people always think the worst is about to happen. For

>Audrey it has been a real help and it is considered for of Palliative (SP)

>care. They are there for all kinds of support, pastorial services,

>counceling

>services, medicines are supplied, diapers, and just about anything Audrey

>needs

>is taken care of. For children it works a bit differently than for

>adults,

>especially children with mito.

>

>Unfortunately right now Audrey is not doing very well. She has another

>virus, what the docs are saying is hand, foot and mouth disease. She is

>also

>having diarrhea and vomiting with it plus a fever. Last year Dr. Cohen

>didn't

>think she would be with us for her second birthday, but on the 10th she

>will

>be three. Amie doesn't say much, but she always gets very worried around

>her

>birthday. She called and wanted me to come down tonight for a while so of

>course I went right away. Amie is having a really hard time right now and

>is

>very scared. I don't now what to say to her when she cries, she just

>wants

>her baby to be normal, and of course we all know the answer to that. My

>heart

>breaks for them and for me as well. I try not to cry when I am with Amie,

>but sometimes I can't help it, so, we just sit and cry together. Audrey

>is

>getting so weak and she seems to get a virus every other week. She gets

>over

>one and then another one appears, and after each one she is even weaker.

>Her

>smiles are still there but sometimes you can see it only in her eyes.

>Please

>say a few extra prayers for Audrey tonight as I will for your sweet

>.

>

>Please keep me updated, if you would like to email me privately that would

>be fine as well.

>

>Praying for all,

>Kathy, grandma to Audrey, soon to be 3 years on the

>10th!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

[Guest guest]

Kathy:

So sorry to hear that Audrey is ill. We just got over the same disease.

Was worried when Leah wasn't wanting to drink and even with a small fever

of 100.5 degrees she gets very low key. But she is much better and finally

eating. It lasted in our house for fever for two days. But I know Audrey

is in a different stage than Leah is. I think that you can cry with your

daughter is the best thing. She is not a lone in this illness. You understand

her grief and concerns. You've been very supportive of her and her family;

you can't do much better than that. I can also understand Amie's feelings

on you getting motorcycles. Its an underlying fear that some thing may happen

to you, too. But I think it is great that you went with your feelings and

got them. I wish we could have a photo of you on the "hogs". Grief is a

funny thing. Some days are good and some days you don't know what to do

with yourself and your feelings. Because the doctors stated that Audrey

wouldn't make her second birthday puts an unknown fear in you. Will she

make the third birthday now that that is around the corner. And especially

with her getting weaker with each virus. I'm so glad that Audrey can smile

and show her love to you all even if it's showing it in her eyes. Eyes have

a way of expressing so much. And from the photos you have always sent,,

she has such big expressive beautiful eyes. Will keep your family in my

prayers this church day. We always have time to pray for others and ourselves

and I can get a lot of prayer time during that minute. Plus as I'm out and

about my day will say special prayers for everyone. Take care and let the

tears flow.

Nerenhausen

mom to Leah

Dklboone@... wrote:

Debbi,

I am glad to hear is home. As for the Hospice, Audrey has

been with Hospice for over a year now. They are wonderful. It was a hard

decision to go with Hospice as people always think the worst is about to

happen. For Audrey it has been a real help and it is considered for of

Palliative (SP) care. They are there for all kinds of support, pastorial

services, counceling services, medicines are supplied, diapers, and just

about anything Audrey needs is taken care of. For children it works a bit

differently than for adults, especially children with mito.

Unfortunately right now Audrey is not doing very well. She has another

virus, what the docs are saying is hand, foot and mouth disease. She is

also having diarrhea and vomiting with it plus a fever. Last year Dr. Cohen

didn't think she would be with us for her second birthday, but on the 10th

she will be three. Amie doesn't say much, but she always gets very worried

around her birthday. She called and wanted me to come down tonight for

a while so of course I went right away. Amie is having a really hard time

right now and is very scared. I don't now what to say to her when she cries,

she just wants her baby to be normal, and of course we all know the answer

to that. My heart breaks for them and for me as well. I try not to cry

when I am with Amie, but sometimes I can't help it, so, we just sit and

cry together. Audrey is getting so weak and she seems to get a virus every

other week. She gets over one and then another one appears, and after each

one she is even weaker. Her smiles are still there but sometimes you can

see it only in her eyes. Please say a few extra prayers for Audrey tonight

as I will for your sweet .

Please keep me updated, if you would like to email me privately that

would be fine as well.

Praying for all,

Kathy, grandma to Audrey, soon to be 3 years on the 10th!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

Please contact mito-owner with any problems or questions.

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