Back at home

[Guest guest]

Hi all,

I just wanted to let you all know that I am back home after my

G/J tube surgery. I was in the hospital until Wednesday, as they decided

to keep me a little longer due to complications. I was allowed to go

home on Wednesday as I was going to my parents' house ( I live alone). I

am finally back at my apartment and taking it easy. I am learning the

ways of the G/J tube and will hopefully pick up tricks of the trade soon.

We are watching for infection, as my temp keeps going up, but I know

things will be okay. Thank you all for your warm thoughts and prayers.

They helped me a lot. Malisa read many of your messages to me when I was

in the hospital and they meant a lot to me.

For those of you who have G/J tubes, (Kristie, Barbara, and

others), do you have a pump that you use, or is it just a slow drip? I

am trying to get a pump, as I feel this might be needed.

Well, I am going back to lying down, sitting up in anything but

my recliner for a period of time is still a little hard and I want to be

up and at them by Friday when I go back to work. Thankfully, I am still

only working around 2 1/2 hours a day at the school, teaching the At Risk

Reading Program.

Thanks again to all of you.

Hugs and bright smiles,

a

On Mon, 9 Aug 2004 22:23:38 EDT Malilibear@... writes:

Hi all,

I wanted to say that I really enjoyed meeting many of you at the

conference.

It was also really good to get some time to talk to some of the mito

specialists, as well, but I really enjoyed spending time with you guys

the most. I

always feel like a few days goes by so fast when I'm at conferences like

this.

Thanks to Laurie, , Bug, and Christie for their hardwork. It

definitely

takes energy to do what all of you did and we're all really appreciative.

I talked with 's mom and also with a tonight. Both were

admitted to the hospital today. flew straight to Cleveland from

the

conference b/c she wasn't feeling well. They got a room at the RMH and

today she got

admitted to CCF. She saw a pediatric GI doctor today who wanted to try a

few

more things before thinking about removing her colon. He'll be coming

back

tomorrow to see her again and they'll talk more about what the plan is.

Her mom

sounded much more hopeful about coming up with a good plan since they'd

seen him.

He sounds like he's really going to try to think about solutions for

.

YAY!

And...a had her GJ tube placed today. She said that she had some

tremors after she woke up and had vomited several times this afternoon.

They are

giving her demerol for pain and it seems to be helping some. They still

have her

NPO and still have an NG tube down for suction if needed. She's not sure

if

she'll go home tomorrow or not, but originally that was the plan.

Please keep both of these inspirational young women in your prayers. I'll

update tomorrow if I hear anything more.

Malisa

[Guest guest]

a,

I'm very happy that you are home and please try to rest. I read your message

and then read at least 3 times the part about going back to work on Friday.

Please get lots of rest so that you don't have more complications from returning

to work so fast.

I can't help you with the tube issue but I'm sure Kristie and Barbara will do so

and perhaps Cindy can help as well. Branden did use a pump.

Alice

[Guest guest]

a

I am glad you are home and getting the hang of the G/J tube. Please don't

try to go back to work on Friday. I'm guessing that it is a staff only day

and you need to get more rest behind you before going back. They will miss

you, but your health comes first.

Hugs,

laurie

>

> Reply-To:

> Date: Fri, 13 Aug 2004 21:58:03 -0500

> To:

> Subject: Back at home

>

> Hi all,

> I just wanted to let you all know that I am back home after my

> G/J tube surgery. I was in the hospital until Wednesday, as they decided

> to keep me a little longer due to complications. I was allowed to go

> home on Wednesday as I was going to my parents' house ( I live alone). I

> am finally back at my apartment and taking it easy. I am learning the

> ways of the G/J tube and will hopefully pick up tricks of the trade soon.

> We are watching for infection, as my temp keeps going up, but I know

> things will be okay. Thank you all for your warm thoughts and prayers.

> They helped me a lot. Malisa read many of your messages to me when I was

> in the hospital and they meant a lot to me.

> For those of you who have G/J tubes, (Kristie, Barbara, and

> others), do you have a pump that you use, or is it just a slow drip? I

> am trying to get a pump, as I feel this might be needed.

> Well, I am going back to lying down, sitting up in anything but

> my recliner for a period of time is still a little hard and I want to be

> up and at them by Friday when I go back to work. Thankfully, I am still

> only working around 2 1/2 hours a day at the school, teaching the At Risk

> Reading Program.

> Thanks again to all of you.

> Hugs and bright smiles,

> a

>

> On Mon, 9 Aug 2004 22:23:38 EDT Malilibear@... writes:

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the

> conference.

> It was also really good to get some time to talk to some of the mito

> specialists, as well, but I really enjoyed spending time with you guys

> the most. I

> always feel like a few days goes by so fast when I'm at conferences like

> this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It

> definitely

> takes energy to do what all of you did and we're all really appreciative.

>

> I talked with 's mom and also with a tonight. Both were

> admitted to the hospital today. flew straight to Cleveland from

> the

> conference b/c she wasn't feeling well. They got a room at the RMH and

> today she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to try a

> few

> more things before thinking about removing her colon. He'll be coming

> back

> tomorrow to see her again and they'll talk more about what the plan is.

> Her mom

> sounded much more hopeful about coming up with a good plan since they'd

> seen him.

> He sounds like he's really going to try to think about solutions for

> .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had some

> tremors after she woke up and had vomited several times this afternoon.

> They are

> giving her demerol for pain and it seems to be helping some. They still

> have her

> NPO and still have an NG tube down for suction if needed. She's not sure

> if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your prayers. I'll

>

> update tomorrow if I hear anything more.

> Malisa

>

>

[Guest guest]

a,

You are a marvel. You are already back at your own place and plan to go

back to work.

I am sorry to hear about the complications, but sometimes I think they

are more the norm for us mito folks than not. I hope the temp isn't

anything to worry about. Take it easy and let us know how you are doing

when you feel up to it.

a C Koch wrote:

>Hi all,

> I just wanted to let you all know that I am back home after my

>G/J tube surgery. I was in the hospital until Wednesday, as they decided

>to keep me a little longer due to complications. I was allowed to go

>home on Wednesday as I was going to my parents' house ( I live alone). I

>am finally back at my apartment and taking it easy. I am learning the

>ways of the G/J tube and will hopefully pick up tricks of the trade soon.

> We are watching for infection, as my temp keeps going up, but I know

>things will be okay. Thank you all for your warm thoughts and prayers.

>They helped me a lot. Malisa read many of your messages to me when I was

>in the hospital and they meant a lot to me.

> For those of you who have G/J tubes, (Kristie, Barbara, and

>others), do you have a pump that you use, or is it just a slow drip? I

>am trying to get a pump, as I feel this might be needed.

> Well, I am going back to lying down, sitting up in anything but

>my recliner for a period of time is still a little hard and I want to be

>up and at them by Friday when I go back to work. Thankfully, I am still

>only working around 2 1/2 hours a day at the school, teaching the At Risk

>Reading Program.

> Thanks again to all of you.

>Hugs and bright smiles,

>a

>

>On Mon, 9 Aug 2004 22:23:38 EDT Malilibear@... writes:

>Hi all,

>I wanted to say that I really enjoyed meeting many of you at the

>conference.

>It was also really good to get some time to talk to some of the mito

>specialists, as well, but I really enjoyed spending time with you guys

>the most. I

>always feel like a few days goes by so fast when I'm at conferences like

>this.

>Thanks to Laurie, , Bug, and Christie for their hardwork. It

>definitely

>takes energy to do what all of you did and we're all really appreciative.

>

>I talked with 's mom and also with a tonight. Both were

>admitted to the hospital today. flew straight to Cleveland from

>the

>conference b/c she wasn't feeling well. They got a room at the RMH and

>today she got

>admitted to CCF. She saw a pediatric GI doctor today who wanted to try a

>few

>more things before thinking about removing her colon. He'll be coming

>back

>tomorrow to see her again and they'll talk more about what the plan is.

>Her mom

>sounded much more hopeful about coming up with a good plan since they'd

>seen him.

>He sounds like he's really going to try to think about solutions for

>.

>YAY!

>

>And...a had her GJ tube placed today. She said that she had some

>tremors after she woke up and had vomited several times this afternoon.

>They are

>giving her demerol for pain and it seems to be helping some. They still

>have her

>NPO and still have an NG tube down for suction if needed. She's not sure

>if

>she'll go home tomorrow or not, but originally that was the plan.

>

>Please keep both of these inspirational young women in your prayers. I'll

>

>update tomorrow if I hear anything more.

>Malisa

>

>

[Guest guest]

Kristie, Glad to hear you are home and beginning to recover. I use a

Kangaroom pump. If you are doing daytime feedings when you are

moving around, most patients prefer the Zervex. You can wear it in a

small waist pack and it will not beep much if it gets tilted (which

the Kangaroom will do--quite annoying.) We always used a pump and

did not try the drip method. In my case, I cannot do my own tube

care, so we have to time the nighttime feeds to match my husband's

schedule. The pump allows us to do that much better, though it is

not always precise. On the same setting, the run time for one bag

can vary by half an hour. For some reason it always seems to run

fast on the mornings when we most want to sleep in. 's law, I

guess. Pumps will also beep in the night for attention if the tube

gets crimped, which does happen sometimes. But we have worked out

methods to minimize that. We did have home visits from a nurse for

several months. The nurses know the practical tips that make a

difference, though we have figured out our own solutions too.

Let me know if I can do anything to help.

Hugs,

Barbara

> Hi all,

> I just wanted to let you all know that I am back home

after my

> G/J tube surgery. I was in the hospital until Wednesday, as they

decided

> to keep me a little longer due to complications. I was allowed to

go

> home on Wednesday as I was going to my parents' house ( I live

alone). I

> am finally back at my apartment and taking it easy. I am learning

the

> ways of the G/J tube and will hopefully pick up tricks of the

trade soon.

> We are watching for infection, as my temp keeps going up, but I

know

> things will be okay. Thank you all for your warm thoughts and

prayers.

> They helped me a lot. Malisa read many of your messages to me

when I was

> in the hospital and they meant a lot to me.

> For those of you who have G/J tubes, (Kristie, Barbara, and

> others), do you have a pump that you use, or is it just a slow

drip? I

> am trying to get a pump, as I feel this might be needed.

> Well, I am going back to lying down, sitting up in

anything but

> my recliner for a period of time is still a little hard and I

want to be

> up and at them by Friday when I go back to work. Thankfully, I am

still

> only working around 2 1/2 hours a day at the school, teaching the

At Risk

> Reading Program.

> Thanks again to all of you.

> Hugs and bright smiles,

> a

>

> On Mon, 9 Aug 2004 22:23:38 EDT Malilibear@a... writes:

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the

> conference.

> It was also really good to get some time to talk to some of the

mito

> specialists, as well, but I really enjoyed spending time with you

guys

> the most. I

> always feel like a few days goes by so fast when I'm at

conferences like

> this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It

> definitely

> takes energy to do what all of you did and we're all really

appreciative.

>

> I talked with 's mom and also with a tonight. Both

were

> admitted to the hospital today. flew straight to Cleveland

from

> the

> conference b/c she wasn't feeling well. They got a room at the RMH

and

> today she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to

try a

> few

> more things before thinking about removing her colon. He'll be

coming

> back

> tomorrow to see her again and they'll talk more about what the

plan is.

> Her mom

> sounded much more hopeful about coming up with a good plan since

they'd

> seen him.

> He sounds like he's really going to try to think about solutions

for

> .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had

some

> tremors after she woke up and had vomited several times this

afternoon.

> They are

> giving her demerol for pain and it seems to be helping some. They

still

> have her

> NPO and still have an NG tube down for suction if needed. She's

not sure

> if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your

prayers. I'll

>

> update tomorrow if I hear anything more.

> Malisa

>

>

[Guest guest]

-Dear a, I'm glad to hear you are back safe and sound and now

recovering from the surgery. From what I hear, once people learn the

" tricks of the trade " about dealing with the gj tube and adjust to

the body image thing they all get along quite fine with it and do

well from the improvement in nutrition. You have been in my prayers

all week and will continue to be so. Don't go back to work too soon- .

Us Mitoers (if I may call myself that without a proper diagnosis) take

longer than usual to recover from things , as you know. Take care, Celia

- In , a C Koch wrote:

> Hi all,

> I just wanted to let you all know that I am back home after my

> G/J tube surgery. I was in the hospital until Wednesday, as they

decided

> to keep me a little longer due to complications. I was allowed to go

> home on Wednesday as I was going to my parents' house ( I live

alone). I

> am finally back at my apartment and taking it easy. I am learning the

> ways of the G/J tube and will hopefully pick up tricks of the trade

soon.

> We are watching for infection, as my temp keeps going up, but I know

> things will be okay. Thank you all for your warm thoughts and prayers.

> They helped me a lot. Malisa read many of your messages to me when

I was

> in the hospital and they meant a lot to me.

> For those of you who have G/J tubes, (Kristie, Barbara, and

> others), do you have a pump that you use, or is it just a slow drip? I

> am trying to get a pump, as I feel this might be needed.

> Well, I am going back to lying down, sitting up in anything but

> my recliner for a period of time is still a little hard and I want

to be

> up and at them by Friday when I go back to work. Thankfully, I am still

> only working around 2 1/2 hours a day at the school, teaching the At

Risk

> Reading Program.

> Thanks again to all of you.

> Hugs and bright smiles,

> a

>

> On Mon, 9 Aug 2004 22:23:38 EDT Malilibear@a... writes:

> Hi all,

> I wanted to say that I really enjoyed meeting many of you at the

> conference.

> It was also really good to get some time to talk to some of the mito

> specialists, as well, but I really enjoyed spending time with you guys

> the most. I

> always feel like a few days goes by so fast when I'm at conferences like

> this.

> Thanks to Laurie, , Bug, and Christie for their hardwork. It

> definitely

> takes energy to do what all of you did and we're all really

appreciative.

>

> I talked with 's mom and also with a tonight. Both were

> admitted to the hospital today. flew straight to Cleveland from

> the

> conference b/c she wasn't feeling well. They got a room at the RMH and

> today she got

> admitted to CCF. She saw a pediatric GI doctor today who wanted to try a

> few

> more things before thinking about removing her colon. He'll be coming

> back

> tomorrow to see her again and they'll talk more about what the plan is.

> Her mom

> sounded much more hopeful about coming up with a good plan since they'd

> seen him.

> He sounds like he's really going to try to think about solutions for

> .

> YAY!

>

> And...a had her GJ tube placed today. She said that she had some

> tremors after she woke up and had vomited several times this afternoon.

> They are

> giving her demerol for pain and it seems to be helping some. They still

> have her

> NPO and still have an NG tube down for suction if needed. She's not sure

> if

> she'll go home tomorrow or not, but originally that was the plan.

>

> Please keep both of these inspirational young women in your prayers.

I'll

>

> update tomorrow if I hear anything more.

> Malisa

>

>

[Guest guest]

Thanks for the well wishes. I am glad to be home, but am taking

it easy. I am still pretty weak, wobbly and dizzy, especially today, so

I am not doing much of anything. I am trying to rely on others to bring

my meals in,as I don't have the energy to get them ready (even if it is

just to microwave it) :-)

I plan on taking it very easy when I have to go back to work. I

already decided not to go to the event on Wednesday to meet the new

superintendent. I know I will need that time to recoup. I have already

talked to one of the teachers that I am close friends with and our rooms

are next to each other. She is planning on helping me when school first

starts, as she doesn't have kids the first few days and I will just be

getting organized and getting tests booklets made up for when I do my

assessments. I will check how I am feeling on Tuesday and call my

principal then. I want to be at a good point before I head back.

I want to thank Malisa for all of the updates on and I.

She is not feeling the best right now, so it takes a lot of energy for

her to do all this. She is a very amazing and inspirational person.

Smiles,

a

On Fri, 13 Aug 2004 21:40:07 -0600 " A ADAMS " justagram14@...>

writes:

a,

I'm very happy that you are home and please try to rest. I read your

message and then read at least 3 times the part about going back to work

on Friday. Please get lots of rest so that you don't have more

complications from returning to work so fast.

I can't help you with the tube issue but I'm sure Kristie and Barbara

will do so and perhaps Cindy can help as well. Branden did use a pump.

Alice

[Guest guest]

Thanks Celia. How have you been doing lately?

Smiles,

a

On Sat, 14 Aug 2004 16:33:26 -0000 " cghng888 " cghng888@...> writes:

-Dear a, I'm glad to hear you are back safe and sound and now

recovering from the surgery. From what I hear, once people learn the

" tricks of the trade " about dealing with the gj tube and adjust to

the body image thing they all get along quite fine with it and do

well from the improvement in nutrition. You have been in my prayers

all week and will continue to be so. Don't go back to work too soon- .

Us Mitoers (if I may call myself that without a proper diagnosis) take

longer than usual to recover from things , as you know. Take care, Celia