Re: Missy (warning ..... loooooong post lol)

[Guest guest]

Missy:

No, the syringes are not prefilled. It all comes in a

little kit, there are four different little packets

per box of Enbrel. Each comes with a syringe with

liquid mixing agent (can't remember what it is

exactly), and you attach a little piece to the end of

the syringe, put the small bottle of Enbrel powder

onto it, and then inject the liquid, just shake or

swirl it around, and it mixes up very easily. There

are a couple of premoistened alcohol pads. Then you

take the bottle and piece off, place the needle (and

it is very delicate so I would call it small) on the

top of the syringe, and wellah! your Enbrel is ready

for inecting. Think I answered that in pretty

understandable language even with my fibrofog lol, but

if you have any other question about it, just ask.

My son was born 3 months premature, had heart defects

and we knew he needed open heart surgery to repair

them, and, because of his stridor or wheeze when he

breathed, the doctors wanted to find out the reason

for it before his surgery. However, the procedure

caused his windpipe to swell so much that he had to

have an emergency trach done. He was 3 years old. It

is hole made into the windpipe into into which a

plastic tube was placed, attached by two ties around

his neck, and his air would then go in and out of the

trach. They did not find out at that time what

the problem was, but later we did. It was a very scary

procedure, and when my very talkative toddler woke up,

he could not talk because the air goes out of the

trach. Boy, he still was able to show us how mad

he was, though! He had to learn to breathe out, place

his finger over the trach hole, and talk quickly. He

learned very fast - lol - he pretty much told us the

day after the sugery that the whole thing was a very

bad idea in his opinion!

As it turned out, when we went to a specialist

for respiratory problems when he was 6 years old,

after his heart surgery, he was found to have a

narrowing in his windpipe just above the vocal chords

(one of which is paralyzed - probably from being

intubated and extubated so many times as a tiny

preemie) and this was what had caused the wheezing.

When he was 6 years old he had the open heart surgery

and a year after that had surgery to repair the

tracheostomy. The doctor took grafts from one of his

ribs and placed them on the front and back of his

windpipe, basically making him a new windpipe. It was

one of the first of these sorts of procedures to be

done, and the only chance he had to be rid of the

trach forever. He was also medically put into a coma

for a week, so the repair to his trach could heal. It

was a very stressful time, to say the least, but it

worked, and he was talking normally again within a few

days, and has not stopped since lol. He has never been

at a loss for words.

When he had the trach, for two years, I needed to

suction him often for secretions that would build up

in his trach tube - he hated that because while the

suctioning was going on, he could not breathe. Just

quick little suctionings, but obviously stressful to

him. I also had to remove the tube from the trach

hole, clean the hole area because it would get very

irritated by the secretions, exchange the trach tube

it for a fresh one, and then wash and sterilze the

used one so that it could be exchanged the next trach

change. It had to be changed pretty much daily. He

was also on a machine at night, attached to the trach,

that pushed air into his windpipe to keep the trach

tube open and help him to breathe. He also hated

that. But with time, he came to understand that it

had to be done, and stopped fighting so much, but he

never liked it, and I didn't blame him! It was a

nasty two years, and I was more of a nurse than his

mom at times, but you do what you have to do - you

know what I mean.

Yes, we have all been through a lot with my son's

medical problems, but what we went through paled in

comparison to what our little guy went through, and

was such a trooper throughout. It is the hardest

thing to have a sick child, as you know all too well.

We could understand what was going on, he couldn't,

and it was very hard. You wish you could take their

place, and spare them, but you can only comfort and

love, and try to get them through what they have to

have done.

Chip is now 22, teaching in an elementary school, in a

classrooom with autistic children 6 and 7 years old,

helping them to learn to socialize and go forth in

their education, and he absolutely loves it. He is so

good with kids, and especially with kids who have

special needs. He helped out in high school with the

special needs classes too, and some of those kids are

now in the same college as he is and run and hug him

when they see him. I think because of all he has gone

through, he is more sensitive to the needs of others,

and instictively the children understand that he

understands, you know? He went and still goes through

a lot of teasing about his voice (kind of raspy and

more quiet than normal), his scars, his height (he's

only 5'3 " , but we are not all that tall anyway), and

he knows what it's like to be the one who is

different. He is going for a degree in education and

psychology, and wants to be a child psychologist or

school psychologist. He is a very caring young man,

and I am so very proud of him.

Your is the younger of your girls, with an older

sister of 8 years, right? That must be very hard on

you, and also hard on the older sister. With us, Chip

was our first baby, and so we could totally focus on

him during those first 3 years until his sister was

born. I don't know how I could have done it if I had

had another child at home who needed me too. When

Kasey was born 3 years later, she never knew any

different of her brother. He was sick, he took meds,

but was her brother and she idolized him. When she

was only 1 year old, he had the trach done, and did

not even notice the trach first time she saw him after

surgery, just hugged and kissed him, and was so happy

to see him. She never saw him as different, he was

just her brother and that was the way he was.

I was very lucky in that my parents lived nearby, and

when Chip needed to be in the hospital, Kasey stayed

with her grandma and grandpa. Kasey was kind of

shuffled around at times, but she was so little she

just kind of flowed with it. She was only a year old

when he got his trach, and then 4 years old and 5

years old when he had his open heart and trach repair

surgeries, so she did not really know any different.

Our constant medical stuff was her " normal " - it just

was the way it was. Yes, as she got into the toddler

stage she did get jealous of her brother seeming to

have mommy and daddy all to himself in the hospital,

or getting more attention because of his illness, but

she had her grandparents to herself more, so he was

jealous of that lol. He was also jealous that she did

not have any medical problems and was healthy. We

raised them as equals, he was not " babied " even though

more attention had to be given him at times because of

the medical stuff, I tried to be totally fair with

them, and he and his sister both got their spanks.

It is very hard to juggle an ill child and a healthy

one. You always feel like one is going to feel left

out, you are spending too much time with the sick one,

and the other child needs you too - such a balancing

act, to try and ensure yourself that both are taken

care of and given special time alone with you. As a

parent you do the best you can with the circumstances

you are given. All siblings are jealous of each other

for different reasons, it happens in " normal " families

too, sibling rivalry is not a new thing lol. I did

not try to make time with them " equal " or the same, I

responded to their needs as they came along, and think

I did a pretty good job of it, if I do say so myself.

I have to say something that my mom always told me

when Chip was small and things were so hard, she said

that God does not give people more than they can

handle, and that He knew that we would be okay with a

more difficult road, and, although I thought many a

time that He had surely knocked on the wrong door, and

that I could not handle any more, I did, and I know

that you will too. I believe that these special

children get special parents (not to pat myself on the

back or anything), and we are blessed to have them,

and they us, that somehow in the greater scheme of

things it was meant to be.

I am sorry that this is soooooooo long LOL. I kind of

ramble at times, but hope that it all makes some kind

of sense to you, Missy! The Make A Wish Foundation is

wonderful - I am so happy that your family got that

trip! What great memories! and the chance of a

lifetime! You and are always in my prayers -

Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

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