Update on Xavier

[Guest guest]

We're home!

We came home on Thursday night after 15 loooong days in the hospital. He had

a fundoplacation, which is where they wrap the top of the stomach around the

bottom of the esophagus so that he can't vomit anymore. Then he had a

permanent feeding tube placed in his stomach. There was a lot of debate between

all

of his Drs. about doing this surgery..they all agreed he needed it, but

because he was so small and had lost even more weight since being admitted,

there

were a lot more risks with the surgery. They tried to get him to gain weight

first by putting in an NG tube down his nose into his stomach to bypass him

having to swallow anything, but he still threw up even with that and all the

medications he was on to prevent him from vomiting. It came to the point where

the

Drs. could not tell us for sure if he was going to make it because he was so

malnourished at that point, and had NO energy. He just laid there all day and

couldn't move. He went a week on nothing but IV fluids. They wanted to keep

trying with the NG tube, but I refused to consent to it because farting

around with it was making him worse..I got the surgeon to agree with me that the

risk of surgery before he gained some weight was better than the risk of letting

him get worse, (duh) and we argued with the other Drs. till we got our way.

I have to admit though, the day he went for surgery, I was really freakin

scared..if things went wrong, it was all on me, since I'm the one who made the

decision. We were told that he would take much longer to recover from the

surgery because he had no muscle to help repair the wounds, (his body was

breaking down his muscles for energy at that point) and it would be 7-12 days

before

he would be able to try and eat, as opposed to the 24-48 hrs that it normally

takes. However, after surgery, he rebounded much quicker than that, and was

trying clear liquids through his G tube in 24 hours...stumped us all! He moved

on to formula later that night, again much sooner than planned, and did

great. We did have a scare the third day, as he started pooping uncontrollably,

which is a sign of not tolerating his feeds, but luckily he had just contracted

rotovirus, (causes stomach problems, lots of kids get it, especially in the

hospital) so that set us back a few days. But, as soon as he got over that, he

reached his goal volume and calories and was able to go home! He has gained

almost half a kilo, (a little over a pound) which for him is incredible, as he

will go 6 months without gaining an ounce. He is improving in leaps and

bounds. He wants to eat now, and will grab his spoon out of the baby food jar

and

try and feed himself. He is not miserable anymore, even his skin is clearing

up. His energy level is way up and he is doing more age appropriate things.

And it's been less than a week since he started using the tube!

The mixed blessing of being in the hospital was that we had every test he

needed done in about 3 days, and got established with all of the specialists

that

he needed to get in with..which would have taken us months to do as an

outpatient. The Drs. were all very receptive to listening to me about RSS and

everyone agrees that this is what he has. He just also has the 18th chromosome

abnormality on top of it. All of his test results were encouraging, but

puzzling, as most everything was NORMAL! He had several gastric tests to find

out the

reason for his vomiting, and physically he is fine..swallows fine, (once it

gets there, he had no interest in doing the work at first, but has overcome

that..he is even chewing now, and I was told that getting to that point would

take months of therapy, and he has done it himself in a matter of a week) does

not aspirate anything into his lungs. His stomach empties a little slow, but no

big deal. His echo of his heart showed what we already knew, a small

functional hole. His EEG showed no seizures. With his MRI, (this is the most

incredible part) the neurologist came in before she looked at his films to check

him

out, and to talk to me about the MRI he had had done in OK and what it

meant..basically that he would be retarded and that he would never catch up

developmentally. He had a delay in the normal maturation of his brain. Bad

news.

Then she came in the next morning and told me that she had looked at his new MRI

and that it showed a normal brain for a 15 month old..no abnormal delay at

all...it caught up. Which is amazing considering the lack of nourishment he was

getting from throwing up all of the time. So his brain is normal. And in

evaluations, he does not appear to be retarded, in fact, the opposite. He is at

the right spot as far as curiosity and socialization are concerned, and his

physical limitations are very obviously due to the feeding problems. He has

shown already that he can overcome those with the proper feeding. His only

delays

that cannot be fixed are attributed to his deafness, and that's easily

explained. (the reason he doesn't speak, et.) He also has vision problems, so

he

has an apt. with a pediatric ophthalmologist to work on that.

It's so incredible. Since I was pregnant, we were told nothing but horror

stories about him, and how it would be. In evaluations, we were told he was

retarded because of the severe physical/mental delays. However, now we are

seeing the real Xavier, who is intelligent, (pulled out his NG tube with his

toes

when we immobilized his arms curious, frustrated, (good thing) and willing

to work.

He's hooked up with 9 different specialists, physical therapy, occupational

therapy, speech therapy and feeding therapy. He eats a high calorie (27cal)

formula in a small bolus through his tube four times during the day, and is on a

continous feed all night long via a pump. We are so busy right now, usually

I have 2 apts a day, all week long. But it's better than where we were!

Before, the peds I would take him to would not know what I was talking about,

treat what he was there for, (shots, his eczema, whatever) and send us on our

way, because there was nothing " wrong " with him except that he was small. Thank

god we got in to the hospital so that he could have a real workup. Now I have

drs. -asking- to be his dr! I actually had several of them come in and make

a case on why they should be his new pediatrician! I was cracking up inside,

since I have been sent on my merry way so many times before..and now I can't

get them off my back!

The only thing I can think of is that Xavier has one HELL of a guardian angel

in my brother. None of this was happening before Joe died. No drs. would

even look at him, trying to get him into any of these specialists meant months

on a waiting list. Xavier should not have recovered the way he did, as fast as

he did. He had every single thing stacked up against him, and not only did

he overcome them, but he did it faster than a healthy child is expected to do.

Xavier is strong, but I have no doubt in my mind that Joe was helping him

along, helping him to stay strong and fight. It hurts me that Xavier will never

know Joey, but maybe he knows him better than any of us think he does.

Anyway, this is long and took me a looonger time to write, (a little here, a

little there...) but I wanted to let everyone know how he is doing and to

apologize that I have been so out of touch, I have just been so busy! We went

home

and got Emerald and Wyatt from Arizona, so we are trying to get back into a

schedule around here. They were so excited to see Xavier, and they are not

afraid of his tube at all. They are so matter of fact about it..they want to

" feed his tube " with me all the time, and they are very keen on explaining it to

other people. If we are in public and have to feed him, some people stare.

Emerald and Wyatt are very quick to pick this up and explain to them what it is

and why he has it and how great he is...they are too cool.

okay, so, time to feed the monkeys!

Thanks to everyone, we love you!

Jen, Lance, Emerald, Wyatt, and Xavier

[Guest guest]

What a wonderful story!!!! I am so uplifted by your spirits and how

everything turned out. I am so happy for you - and for Xavier. I

love it when doctors are wrong and our kids just shine!

Jodi Z.

[Guest guest]

This is absolutely superb news!!! After everything you have gone

through! I am so proud of you I could just spit!!! HA! You took

the bull by the horns, you recognized your parental gut instinct,

and you stood up for what you knew was right for your son. I am

very proud of you!!! I sure hope we get the chance to meet you this

summer!!! Stay in touch with me privately with regards to the

convention, OK?

>

> We're home!

> We came home on Thursday night after 15 loooong days in the

hospital. He had

> a fundoplacation, which is where they wrap the top of the stomach

around the

> bottom of the esophagus so that he can't vomit anymore. Then he

had a

> permanent feeding tube placed in his stomach. There was a lot of

debate between all

> of his Drs. about doing this surgery..they all agreed he needed

it, but

> because he was so small and had lost even more weight since being

admitted, there

> were a lot more risks with the surgery. They tried to get him to

gain weight

> first by putting in an NG tube down his nose into his stomach to

bypass him

> having to swallow anything, but he still threw up even with that

and all the

> medications he was on to prevent him from vomiting. It came to

the point where the

> Drs. could not tell us for sure if he was going to make it because

he was so

> malnourished at that point, and had NO energy. He just laid there

all day and

> couldn't move. He went a week on nothing but IV fluids. They

wanted to keep

> trying with the NG tube, but I refused to consent to it because

farting

> around with it was making him worse..I got the surgeon to agree

with me that the

> risk of surgery before he gained some weight was better than the

risk of letting

> him get worse, (duh) and we argued with the other Drs. till we got

our way.

> I have to admit though, the day he went for surgery, I was

really freakin

> scared..if things went wrong, it was all on me, since I'm the one

who made the

> decision. We were told that he would take much longer to recover

from the

> surgery because he had no muscle to help repair the wounds, (his

body was

> breaking down his muscles for energy at that point) and it would

be 7-12 days before

> he would be able to try and eat, as opposed to the 24-48 hrs that

it normally

> takes. However, after surgery, he rebounded much quicker than

that, and was

> trying clear liquids through his G tube in 24 hours...stumped us

all! He moved

> on to formula later that night, again much sooner than planned,

and did

> great. We did have a scare the third day, as he started pooping

uncontrollably,

> which is a sign of not tolerating his feeds, but luckily he had

just contracted

> rotovirus, (causes stomach problems, lots of kids get it,

especially in the

> hospital) so that set us back a few days. But, as soon as he got

over that, he

> reached his goal volume and calories and was able to go home! He

has gained

> almost half a kilo, (a little over a pound) which for him is

incredible, as he

> will go 6 months without gaining an ounce. He is improving in

leaps and

> bounds. He wants to eat now, and will grab his spoon out of the

baby food jar and

> try and feed himself. He is not miserable anymore, even his skin

is clearing

> up. His energy level is way up and he is doing more age

appropriate things.

> And it's been less than a week since he started using the tube!

> The mixed blessing of being in the hospital was that we had every

test he

> needed done in about 3 days, and got established with all of the

specialists that

> he needed to get in with..which would have taken us months to do

as an

> outpatient. The Drs. were all very receptive to listening to me

about RSS and

> everyone agrees that this is what he has. He just also has the

18th chromosome

> abnormality on top of it. All of his test results were

encouraging, but

> puzzling, as most everything was NORMAL! He had several gastric

tests to find out the

> reason for his vomiting, and physically he is fine..swallows fine,

(once it

> gets there, he had no interest in doing the work at first, but has

overcome

> that..he is even chewing now, and I was told that getting to that

point would

> take months of therapy, and he has done it himself in a matter of

a week) does

> not aspirate anything into his lungs. His stomach empties a

little slow, but no

> big deal. His echo of his heart showed what we already knew, a

small

> functional hole. His EEG showed no seizures. With his MRI, (this

is the most

> incredible part) the neurologist came in before she looked at his

films to check him

> out, and to talk to me about the MRI he had had done in OK and

what it

> meant..basically that he would be retarded and that he would never

catch up

> developmentally. He had a delay in the normal maturation of his

brain. Bad news.

> Then she came in the next morning and told me that she had looked

at his new MRI

> and that it showed a normal brain for a 15 month old..no abnormal

delay at

> all...it caught up. Which is amazing considering the lack of

nourishment he was

> getting from throwing up all of the time. So his brain is

normal. And in

> evaluations, he does not appear to be retarded, in fact, the

opposite. He is at

> the right spot as far as curiosity and socialization are

concerned, and his

> physical limitations are very obviously due to the feeding

problems. He has

> shown already that he can overcome those with the proper feeding.

His only delays

> that cannot be fixed are attributed to his deafness, and that's

easily

> explained. (the reason he doesn't speak, et.) He also has vision

problems, so he

> has an apt. with a pediatric ophthalmologist to work on that.

> It's so incredible. Since I was pregnant, we were told nothing

but horror

> stories about him, and how it would be. In evaluations, we were

told he was

> retarded because of the severe physical/mental delays. However,

now we are

> seeing the real Xavier, who is intelligent, (pulled out his NG

tube with his toes

> when we immobilized his arms curious, frustrated, (good thing)

and willing

> to work.

> He's hooked up with 9 different specialists, physical therapy,

occupational

> therapy, speech therapy and feeding therapy. He eats a high

calorie (27cal)

> formula in a small bolus through his tube four times during the

day, and is on a

> continous feed all night long via a pump. We are so busy right

now, usually

> I have 2 apts a day, all week long. But it's better than where we

were!

> Before, the peds I would take him to would not know what I was

talking about,

> treat what he was there for, (shots, his eczema, whatever) and

send us on our

> way, because there was nothing " wrong " with him except that he was

small. Thank

> god we got in to the hospital so that he could have a real

workup. Now I have

> drs. -asking- to be his dr! I actually had several of them come

in and make

> a case on why they should be his new pediatrician! I was cracking

up inside,

> since I have been sent on my merry way so many times before..and

now I can't

> get them off my back!

> The only thing I can think of is that Xavier has one HELL of a

guardian angel

> in my brother. None of this was happening before Joe died. No

drs. would

> even look at him, trying to get him into any of these specialists

meant months

> on a waiting list. Xavier should not have recovered the way he

did, as fast as

> he did. He had every single thing stacked up against him, and not

only did

> he overcome them, but he did it faster than a healthy child is

expected to do.

> Xavier is strong, but I have no doubt in my mind that Joe was

helping him

> along, helping him to stay strong and fight. It hurts me that

Xavier will never

> know Joey, but maybe he knows him better than any of us think he

does.

> Anyway, this is long and took me a looonger time to write, (a

little here, a

> little there...) but I wanted to let everyone know how he is doing

and to

> apologize that I have been so out of touch, I have just been so

busy! We went home

> and got Emerald and Wyatt from Arizona, so we are trying to get

back into a

> schedule around here. They were so excited to see Xavier, and

they are not

> afraid of his tube at all. They are so matter of fact about

it..they want to

> " feed his tube " with me all the time, and they are very keen on

explaining it to

> other people. If we are in public and have to feed him, some

people stare.

> Emerald and Wyatt are very quick to pick this up and explain to

them what it is

> and why he has it and how great he is...they are too cool.

> okay, so, time to feed the monkeys!

> Thanks to everyone, we love you!

> Jen, Lance, Emerald, Wyatt, and Xavier

>

>

>

>