Thanks everyone, problems with Xavier

[Guest guest]

First of all, I just wanted to say thank you to everyone who responded to me

when I needed to cry, it really helps to have so many people to talk to!

Xavier is having more problems, but from what I gather, they are not

uncommon. He is gagging/retching again, like he did before his fundo, and it

has

gotten progressively worse, from once every other week or so, to every time I

feed

him. He does not bring anything but thick mucous up, but the strain and

everything is something that we would like to avoid! I took him back to the GI

doc today for this problem, and they measured him for his button. I also told

them that I thought that he was seriously impacted, since even with a

higher/more frequent dose of Mirilax, he was not pooping. Sure enough, even

after an

enema, (and about 15 min of myself and two nurses standing over him waiting,

and him staring back at us like, " yeah right " ) he still had not pooped. So they

had to disimpact him, which he was not happy about, but better out than in.

He's been put back on Reglan to see if this will help, but unfortunately, they

are talking about doing a pyloroplasty if the Reglan does not help. I had

asked if this should be done at the same time as the fundo, but his surgeon did

not think it necessary. I don't blame her at all, I mean, no one can predict

the future, however, I am a little upset at the prospect of another surgery.

When they took out his gtube to measure for the button, he was spewing formula

everywhere, like ol' faithful, lol... but he had been fed 3 hours before

hand, and should not have been that full! So hopefully, the Reglan will help

and

no surgery will be needed. (for this anyway)

On another note, we are desperately trying to move back to Phoenix. So much

has happened in the past six months, it's just not right for us to be here and

so far away, not just because of the deaths in the family, but also because

here in Las Vegas, we don't know anyone at ALL. When Xavier got sick, we were

stuck, we had no one here to watch the kids, so we had to fly them to AZ to

stay with my parents. My husband is an airline mechanic and works nights, so he

sleeps during the day, and is gone all night, so I am alone in schlepping all

three kids to the Drs. and handling the therapy apts. and the house, the

bills, et, et. Not that he doesn't try to help, he just works LONG hours. For

my

sanity as well as our whole families, it would be so much better. We would

have help with the kids, they would have other kids to play with/grow up with,

our family is there, cousins, my parents, and our best friends, who happen to

be married to each other, (lucky us that it worked out like that, it's like a

soap opera) and are also the kids God parents....and best of all, if we moved

back, we would be able to work out our schedules with them so that none of our

kids are in day care. I would LOVE to go back to work just a day or two a

week, to keep up with healthcare, and have some adult conversation. I would be

able to work for a registry where I can tell them what days/hours I want to

work, so we would always have at least one of the four adults home for the kids.

Not having to worry about the kids being in day care and knowing that they

are with their godparents, plus not having the cost of daycare would be SOO

nice. They are not afraid of Xavier, like so many people in our family are, in

fact, they are the only other two people who have ever even fed/taken care of

Xavier, meds and all. They expecting their first baby in June, and I know that

she could use the help as well! Since Lance works for the airlines, you can

imagine that it is not easy for him to just switch jobs...as there are so few

to be had right now. However, today he found out that a co worker of his has

an " in " with the company he wants to work for in Phx, so we are waiting to see

how good his contacts are, we should find out later today. So please, chant,

pray, cross all appendages, or whatever you do, hoping that we get it. We all

so desperately need a break!

On another note (!) I went to the dr. today to find out what is going on with

me, since I have been having so many complications since my surgery in Nov.

I have pretty much had my period since then, with a break of 3 or 4 days in

between. (imagine how much I spend in tampons, lol) and I had to have an

ultrasound. The good news is, that I still have my ovaries. (the nurse at the

hospital told me that the dr. had to remove them both.) The bad news is, that I

have fibroids that are pretty big. Like, I thought that I just had a really

stubborn post partem bulge, but in reality, it's fibroids. I have to go on

birth

control to try and shrink it, or else it's surgery for me again. Just think,

can't have kids anymore, but I have to be on birth control anyway. Hahahaa..

I'm actually not surprised, though I thought it was something else, everyone

in my family has had them, my grandmother had one the size of a cantaloupe,

and my Mom had a bunch too. They both had hysterectomies, but I am too young

for that! Anyway...

Thanks to everyone, you are all so great!

Jen and Lance

Xavier 17months, 17lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal Soy

Formula, Reglan, Myrilax, ST, OT, PT, FT

Emerald, 5, Non RSS

Wyatt, 4, Non RSS

[Guest guest]

Jen,

Oh, my God, you are going through a lot! I could just feel the pain

and worry and frustration in your message. I was glued to the

screen as I read. (I sure hope that typing all that helped you get

some relief, too.)

Regarding the " spewing " of formula when Xavier's button was

changed.... Do you ever vent him? That helps tremendously with the

overloaded stomach and dysmotility. In fact, I am a huge proponent

of Farrell Valves for overnight venting because I think they help so

much to get out air and extra residuals. Whenever Max seems to have

his system shut down, more frequent venting really helps.

As for the rest, I hope and pray that you are able to move back to

Phoenix. It sounds like you tried something new, it did not work

out, and now you KNOW you need your family and friends to rally

around and help out. By the way, I, too, find that friends can be

more helpful and involved than family. I don't understand why, but

it is so true.

Please let us know how things work out. I'm sure many of us will be

waiting to hear!

Jodi Z.

[Guest guest]

> Regarding the " spewing " of formula when Xavier's button was

> changed.... Do you ever vent him? That helps tremendously with the

> overloaded stomach and dysmotility. In fact, I am a huge proponent

> of Farrell Valves for overnight venting because I think they help so

> much to get out air and extra residuals. Whenever Max seems to have

> his system shut down, more frequent venting really helps.

>

Yes, that's what is so frustrating...we have been venting him all this time,

ever since we left the hospital, before and after feedings, before he gets

hooked up to his pump at night, and when he comes off in the morning...and

still,

he is that bad. Have any of you ever tried to use milicon, or simithicone

(sp?) drops through the tube to help with how gassy they are? I haven't tried

it, but thought that it might help?

Jen and Lance

Xavier 17months, 17lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal Soy

Formula, Myrilax, ST, OT, PT, FT

Emerald, 5, Non RSS

Wyatt, 4, Non RSS

[Guest guest]

Hi Jen,

Boy it sure sounds like you have your hands full! It would be

great if you could move back to Phoenix, our family is about as

supportive as a wet noodle but we have great friends here who will

take Olivia for play dates regularly ( she had no tube but she's

certainly a handful and quite wild, but very loving and emotional).

Emotionally for you it sounds like a good idea also, I know what

it's like to move to a new place and not know anyone, it's so good

just to get out for 1/2 an hour with a friend just to get that

little break in. Keep your chin up and know that I have every

finger, toe, appendage crossed for you! (i'd try to cross my eyes

but then i can't type, lol)

Can't wait to IM with you again.

Take care of your selves!!

Leah, mom to Ash 9 and Olivia 4.5 yrs, 18lbs, 33 " (lactulose,

senokot, zantac)

> First of all, I just wanted to say thank you to everyone who

responded to me

> when I needed to cry, it really helps to have so many people to

talk to!

> Xavier is having more problems, but from what I gather, they are

not

> uncommon. He is gagging/retching again, like he did before his

fundo, and it has

> gotten progressively worse, from once every other week or so, to

every time I feed

> him. He does not bring anything but thick mucous up, but the

strain and

> everything is something that we would like to avoid! I took him

back to the GI

> doc today for this problem, and they measured him for his button.

I also told

> them that I thought that he was seriously impacted, since even

with a

> higher/more frequent dose of Mirilax, he was not pooping. Sure

enough, even after an

> enema, (and about 15 min of myself and two nurses standing over

him waiting,

> and him staring back at us like, " yeah right " ) he still had not

pooped. So they

> had to disimpact him, which he was not happy about, but better out

than in.

> He's been put back on Reglan to see if this will help, but

unfortunately, they

> are talking about doing a pyloroplasty if the Reglan does not

help. I had

> asked if this should be done at the same time as the fundo, but

his surgeon did

> not think it necessary. I don't blame her at all, I mean, no one

can predict

> the future, however, I am a little upset at the prospect of

another surgery.

> When they took out his gtube to measure for the button, he was

spewing formula

> everywhere, like ol' faithful, lol... but he had been fed 3 hours

before

> hand, and should not have been that full! So hopefully, the

Reglan will help and

> no surgery will be needed. (for this anyway)

> On another note, we are desperately trying to move back to

Phoenix. So much

> has happened in the past six months, it's just not right for us to

be here and

> so far away, not just because of the deaths in the family, but

also because

> here in Las Vegas, we don't know anyone at ALL. When Xavier got

sick, we were

> stuck, we had no one here to watch the kids, so we had to fly them

to AZ to

> stay with my parents. My husband is an airline mechanic and works

nights, so he

> sleeps during the day, and is gone all night, so I am alone in

schlepping all

> three kids to the Drs. and handling the therapy apts. and the

house, the

> bills, et, et. Not that he doesn't try to help, he just works

LONG hours. For my

> sanity as well as our whole families, it would be so much better.

We would

> have help with the kids, they would have other kids to play

with/grow up with,

> our family is there, cousins, my parents, and our best friends,

who happen to

> be married to each other, (lucky us that it worked out like that,

it's like a

> soap opera) and are also the kids God parents....and best of all,

if we moved

> back, we would be able to work out our schedules with them so that

none of our

> kids are in day care. I would LOVE to go back to work just a day

or two a

> week, to keep up with healthcare, and have some adult

conversation. I would be

> able to work for a registry where I can tell them what days/hours

I want to

> work, so we would always have at least one of the four adults home

for the kids.

> Not having to worry about the kids being in day care and knowing

that they

> are with their godparents, plus not having the cost of daycare

would be SOO

> nice. They are not afraid of Xavier, like so many people in our

family are, in

> fact, they are the only other two people who have ever even

fed/taken care of

> Xavier, meds and all. They expecting their first baby in June,

and I know that

> she could use the help as well! Since Lance works for the

airlines, you can

> imagine that it is not easy for him to just switch jobs...as there

are so few

> to be had right now. However, today he found out that a co worker

of his has

> an " in " with the company he wants to work for in Phx, so we are

waiting to see

> how good his contacts are, we should find out later today. So

please, chant,

> pray, cross all appendages, or whatever you do, hoping that we get

it. We all

> so desperately need a break!

> On another note (!) I went to the dr. today to find out what is

going on with

> me, since I have been having so many complications since my

surgery in Nov.

> I have pretty much had my period since then, with a break of 3 or

4 days in

> between. (imagine how much I spend in tampons, lol) and I had to

have an

> ultrasound. The good news is, that I still have my ovaries. (the

nurse at the

> hospital told me that the dr. had to remove them both.) The bad

news is, that I

> have fibroids that are pretty big. Like, I thought that I just

had a really

> stubborn post partem bulge, but in reality, it's fibroids. I have

to go on birth

> control to try and shrink it, or else it's surgery for me again.

Just think,

> can't have kids anymore, but I have to be on birth control anyway.

Hahahaa..

> I'm actually not surprised, though I thought it was something

else, everyone

> in my family has had them, my grandmother had one the size of a

cantaloupe,

> and my Mom had a bunch too. They both had hysterectomies, but I

am too young

> for that! Anyway...

> Thanks to everyone, you are all so great!

> Jen and Lance

> Xavier 17months, 17lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal

Soy

> Formula, Reglan, Myrilax, ST, OT, PT, FT

> Emerald, 5, Non RSS

> Wyatt, 4, Non RSS

>

>

>

>

[Guest guest]

Jen,

I had the same issue with my son when he was younger. I could not find

a

doctor around here to tell me why he was retching so bad. He is 10 now, and no

longer does that. I think he stopped when he was about 7 years old or so. I

now

know the reason he retched so bad. His fundoplication was too tight. He got

his g-

tube and fundo at 6 mos. old. When he was finally able to burp, the retching

stopped. When he was younger though, we tried all the meds they make including

mylicon (simethicone). While we couldn't find anything that worked completely,

the

thing that worked the best was gripewater. I did not want to try this, but the

nurses

that took care of (we had home nursing care until he 2.5 years old)

swore by

this stuff. This is widely used in Jamaica 7 I had to go to a Jamaican grocery

store to

buy it. I have since seen it in a local baby store - Baby Love. It is used for

gassy,

fussy babies. If you can't find it in a store near you, you might find it

online.

Kim C.

> Yes, that's what is so frustrating...we have been venting him all this time,

> ever since we left the hospital, before and after feedings, before he gets

> hooked up to his pump at night, and when he comes off in the morning...and

still,

> he is that bad. Have any of you ever tried to use milicon, or simithicone

> (sp?) drops through the tube to help with how gassy they are? I haven't tried

> it, but thought that it might help?

> Jen and Lance

> Xavier 17months, 17lbs!, 27in RSS, G-tube, Fundoplacation, 27 cal Soy

> Formula, Myrilax, ST, OT, PT, FT

> Emerald, 5, Non RSS

> Wyatt, 4, Non RSS

>

>

>