Re: G-d, Give me STRENGTH!!!!

[Guest guest]

Hey Jodi,

I just want you to know that I am praying for you (and Max)! I am so

sorry for all that you are going through! I don't totally understand,

but pretty close! Just know that you are not alone in all this and

you can call me if you want to just rant and rave! I'll listen.

I can't do to much around here because I think I have a torn ligament

in my ankle, so I'm just sitting around a lot! I would be happy to be

a sounding board for you! I just wish I knew the magic words to make

it all go away! But I am praying for God to give you strength and to

give Max peace and comfort and healing! Hang in there lady! We need

you around here!

Blessings,

Carmen

I'll send my phone number to ya!

[Guest guest]

Hi Jodi,

I feel so badly for you. It is 4:55 and I will be leaving work in 5

minutes. You can reach me on my cell until 6:45 () or at

home after 9:15 at if you want a shoulder to cry on.

You and your family have been through more than anyone should have

too. Know that there are many people who love you and care about

you. Our thoughts and prayers are with you.

Have you called Dr H? Maybe she has an idea?

Judith

[Guest guest]

Jodi,

Please hang in there. You are a trooper. I just wish for once,

just once, things would go smoothly for you.

You are in my thoughts and prayers. I seriously think you should

plan a " runaway " for yourself when Max is feeling better. Just

think you, all alone, on a sunny cruise to the Caribbean with only a

book and a drink at your side............no needles, no feeing

pumps, no medications, no doctors.........just you with a book and a

drink!

Alison

[Guest guest]

Jodi- I will pray for you tonight! I am just sitting here and reading this

email and balling. I am so sorry that you, Max, and your family are going

through all this! I am going to pray that Max, you and your husband are

granted strength and peace during this very difficult time. I am also going to

pray that God gives all your doctors and every person that is involved in Max's

care wisdom to know exactly what is going on with him and how to take care of

him best.

[Guest guest]

Hi Jodi

Out of curiosity, how does the g-j tube/button work??

Does Max's stoma go in through his stomach or straight into his j

dunum(is that how you spell it??) I thought the g j was a tube, so it

could thread through, so Im a bit confused as to how a button would

thread through. Maybe I have all this wrong.

Anyway, my experience with Liams gtube(mic key button) has been,

that it was put to low down in his stomach and caused immense pain

when it blocked the pyloric sphincter at the bottom of his stomach,

of course at the time know one believed that this was happening until

we had barium scans to prove it.Anyway to reduce this pain we still

only have 2mls in the balloon and need to keep something constantly

in his stomach so his tube doesnt get sucked in.

I know this probably wont help Max's problem, but maybe just

insisting on a barium scan to check everything is alright and in the

right place, they do get it wrong sometimes. Could you check the

amount of water in the ballon(if it is a balloon) could they have put

to much in.

Please tell Max to get well for the convention, we are looking

forward to meeting him, apparently ne is meeting Steve Irwin

(crocodile Hunter) this week Imagine how painful that would be!!!

Thinking of you

Jody

> I am about at wit's end. I don't know what to do to help Max and

> I'm going crazy. I just want to run away and escape from it all!

>

> Max had his PEG changed to a button yesterday (still g-j). The

> anesthesia made him really nauseous, so he cried for a long time

> until they found something that helped him. Then he was ravenous,

> but feeling dizzy from the meds. Finally, after 3+ hours in

> recovery, I said it was time to go home and I got him dressed and

> took him home. (The prince would have stayed there all night if I

> had let him! He had a comfortable recliner, a personal TV and the

> attention of several Jamaican nurses who were ready to cater to his

> every whim.) I was exhausted and told my husband NEVER to go out

of

> town again when Max has a medical procedure!

>

> Okay. I slept in the afternoon, I slept last night and woke up

> feeling refreshed. Was Max? No. He had to stay home because he

> could barely talk from the intubation and he said he was still weak

> and shakey. That was fair. It takes 24 hours to get the

anesthesia

> out of the system. But when I came home from work, he was a

wreck!

> He has terrible pains in his lower abdomen and is doubled over. I

> called the GI who said to call Special Procedures where they put in

> the button. SP said that they are sure the tubing is place inside

> correctly and cannot explain the lower abdominal pains. Meanwhile,

> Max is in pain, he is crying and doubled over and all I want to do

> is run away!!!!! I've given him extra Miralax, I'm now going to

> give him Advil instead of the Tylenol we were using.

>

> As I said, I've had enough. Max has had enough. I want this all

to

> go away and let us be a regular family again. Is that possible?

>

> Jodi Z.

[Guest guest]

Dear Jodi,

The pain and frustration in your words is heart-wrenching...I wish

there was something I could say or do to help comfort you, but all I

can do is lift you up to God and pray that he grant you the courage

and strength to go on...I know many of us have had desperate moments,

but somehow we manage to get through. Most of the time it IS because

of a supernatural resilience we have as mother's...I guess He made us

that way so we could endure and be strong for our children. They

need us to be...

You have always offered encouragement and support to others. You and

Max are an inspiration...don't give up now. Like someone else said,

you are a trooper...you are a survivor!

I pray God not give you any more than you can handle...realizing you

probably feel like you are at that point now...

Lots of hugs and prayers are being sent your way...

Take care,

Mom to

[Guest guest]

Oh Jodi how I can feel your pain in this letter. Feeling pain for

your child is the worst pain to deal with, you are a strong woman

and it sounds like you are the rock and corner stone of your

family. I've been thinking of Max often and i feel for his pain

too, when I had my open heart surgery 3 years ago I thought I was

pretty tough until the chronic pain set in, I thought it would never

go away. After a year and a half it finally did but I still have

pain when doing certain things, so for Max I send a big hug and some

understanding of what he is going through. I wish I could help take

the pain away but I'm happy in knowing that God gave Max the best

mom for him and all will be good in the end.

Hugs to all,

Leah, mom to Ash 9 and Olivia 4.5

> I am about at wit's end. I don't know what to do to help Max and

> I'm going crazy. I just want to run away and escape from it all!

>

> Max had his PEG changed to a button yesterday (still g-j). The

> anesthesia made him really nauseous, so he cried for a long time

> until they found something that helped him. Then he was ravenous,

> but feeling dizzy from the meds. Finally, after 3+ hours in

> recovery, I said it was time to go home and I got him dressed and

> took him home. (The prince would have stayed there all night if I

> had let him! He had a comfortable recliner, a personal TV and the

> attention of several Jamaican nurses who were ready to cater to

his

> every whim.) I was exhausted and told my husband NEVER to go out

of

> town again when Max has a medical procedure!

>

> Okay. I slept in the afternoon, I slept last night and woke up

> feeling refreshed. Was Max? No. He had to stay home because he

> could barely talk from the intubation and he said he was still

weak

> and shakey. That was fair. It takes 24 hours to get the

anesthesia

> out of the system. But when I came home from work, he was a

wreck!

> He has terrible pains in his lower abdomen and is doubled over. I

> called the GI who said to call Special Procedures where they put

in

> the button. SP said that they are sure the tubing is place inside

> correctly and cannot explain the lower abdominal pains.

Meanwhile,

> Max is in pain, he is crying and doubled over and all I want to do

> is run away!!!!! I've given him extra Miralax, I'm now going to

> give him Advil instead of the Tylenol we were using.

>

> As I said, I've had enough. Max has had enough. I want this all

to

> go away and let us be a regular family again. Is that possible?

>

> Jodi Z.

[Guest guest]

Jodi,

I am not sure if you remember me or not. We corresponded via e-mail a few years

back comparing our sons, and I found out is a lot like Max. Then, I met

you

at the convention last year, but I don't remember meeting Max. I am sorry I

haven't

commented before on all the things you write about Max, but I sure do read all

your

posts. It takes a strong person to deal with all that you are going through. I

have

had moments like this with & doctors, so I can definitely empathize with

you. I know there isn't much anyone can say to make you feel better, but I hope

that

knowing that you are such a great support person to all of us on this listserve

boosts

your spirits.

Just curious, have you checked to see how much water is in the balloon? I went

through a similar experience with when he was younger, I had home

nursing care, and an RN that had been with before was giving him his

meds

through the balloon port instead of the medication port. He was screaming in

pain &

I didn't know why until I saw her do it. I know Max is old enough to know where

his

meds go, but perhaps he may have been sleeping when he got meds in the hospital.

I

hope Max feels better soon. I'll say a little prayer for things to get better

for both of

you.

Kim C.

[Guest guest]

Hang in there Jodi!!!

I know that it's not easy. We have not been through anyting like you but it

always seems that when you get one step forward God always bring us 15 steps

back. That is how it has been for Laikyn her whole life. She finally started

to gain weight with the periactin and then came down with the roto virus and

has had it now for 6 days. You are a wonderful mom and God will someday reward

you for all you do for Max and for all of us!!! Just take some deep breaths

and try and relax.

Thinking and Praying

(momto laikyn)

[Guest guest]

--- In RSS-Support , " Jodi Zwain "

Jodi,

Sorry to hear Max is having troubles again with the GJ. We just had

TJ's replaced about 3 weeks ago and this time they did the anthesia a

little differently. Instead of using the the trach. tube they used

some high pressure mask that can be used for short procedures. TJ's

replacement surgeries have varied from 1 to 4 hours as they had had

significant trouble getting the j portion in place.

WHile TJ is much younger than Max (regarding ability to express

himself), he did express some stomach discomfort after this last

surgery. The doctor said the stomach and intestinal lining is

irritated and can be painful for a day or so after tube placement.

Perhaps this is what is causing Max's pain.

Hope he is feeling better soon,

Meribeth

[Guest guest]

Hi Jodi,

I know this is a tough time for you and your family. Just try to hang in

there. You can do it. You made it this far. Remember God doesn't give you more

than you can handle. I pray everything will be OK soon. You're an

inspiration to all us newcomers who have infants and young children. Take care

of

yourself and see you in July.