Re: Re: Trach

[Guest guest]

Liz,

You didn't direct this to me, but I can give you my opinion of what could

have

made the difference.

Back then, we had 2 options for securing the trach in place; one was cotton

ribbon ties that were knotted around her neck, the second was a premade

wrap around with velcro clasps holding it in. We always used the cotton

ties,

also had 16 hours rn care during the week, and by 1-2 yrs age I had stopped

the overnight

nurses and slept(?) in the same room with her. She was receiving gavage drip

(gravity) feeds to the g-tube overnight, so I was up and observing her

frequently

during the night.

As she aged, from 2 yrs on-she could cover her trach with her finger and

vocalize

so she could pass air around the trach, and we never suffered a windpipe

collapse

during the short times the trach was out. The issue we had was her neck

muscles

would tighten after a time, making it just a little challenging to reinsert

the trach.

Also, certainly in the beginning, she had her monitors on.

in Ma. (, 21 yrs)

[Guest guest]

Thank you so much for the reply.

One thing, I am concerned about, since I know there was a child recently

that passed away due to pulling out the trach. Isnt this something that can

happen if they are not watched 24/7 ?? How is it that you are able to get

nursing assistance?

is 4 1/2 months and he has been in the NICU and PICU for all except one

month at home, heart surgery and 2 bouts of pneumonia, on respirator.

Thanks again,

Liz

-- Re: Trach Suction/Go Bags to Liz

Liz,

From my knowledge, many kids with CHARGE have trachs for a limited time

period. Some for a few years and some for many years. But I don't believe it

will be a life long thing for us. Ethan always had excessive secretions and

was in the NICU for the first 3 1/2 months of his life. He did have

bilateral choanal atresia and was repaired at 7 days old. One nare is 100%

open and the other is 50% open. After he was released from the NICU, he

developed aspirational pneumonia and was rehospitalized for 3 weeks and on a

vent (he did and still does not have a nissen). But he kept getting sick and

rehospitalized after the pneumonia. The doctors felt that it was an

airway/secretion issue and not a reflux issue so that is why we opted not to

get the nissen. So he was trached at 6 months. His lungs were damaged from

the pneumonia and required oxygen at all times. But over the years, he is

getting stronger and his lungs have improved where he only needs oxygen when

he is

sick. He needs suctioning still, but less and less as time passes. Everytime

he gets sick, I can't imagine him without the trach. It has helped him

develop and not to work so hard on breathing. He hasn't been hospitalized

now for illness for 1 1/2 years and I think in part because of the trach.

Obviously there are risks involved with the trach and children with trachs

have to be monitored at all times. Ethan has nursing care 16 hours a day

which is very helpful so that he can go to school safely and we can get our

sleep at night.

I hope I covered all of your questions, but if not, feel free to ask.

Jody

Jody - mom to Ethan (ChARGE) and

---------------------------------

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[Guest guest]

Thank you Melinda,

I am curious about the RN care, is this something that is provided or you

have to pay for privately?

I just dont see how parents that work and have other children can manage

this round the clock care?

Liz

-- Re: Re: Trach

Liz,

You didn't direct this to me, but I can give you my opinion of what could

have

made the difference.

Back then, we had 2 options for securing the trach in place; one was cotton

ribbon ties that were knotted around her neck, the second was a premade

wrap around with velcro clasps holding it in. We always used the cotton

ties,

also had 16 hours rn care during the week, and by 1-2 yrs age I had stopped

the overnight

nurses and slept(?) in the same room with her. She was receiving gavage drip

(gravity) feeds to the g-tube overnight, so I was up and observing her

frequently

during the night.

As she aged, from 2 yrs on-she could cover her trach with her finger and

vocalize

so she could pass air around the trach, and we never suffered a windpipe

collapse

during the short times the trach was out. The issue we had was her neck

muscles

would tighten after a time, making it just a little challenging to reinsert

the trach.

Also, certainly in the beginning, she had her monitors on.

in Ma. (, 21 yrs)

[Guest guest]

Hi Liz,

Our nursing care was all set up pre-discharge by Boston Childrens Hsptl.

Our insurance paid for it. I don't know the full extent or existence of the

law,

but it seems that at least most states have a provision for state insurance

monies that are available because >without home care, the child would have

to be in a hospital type setting to insure life-sustaining care<.

Sorry I don't remember more about it. It was working, so I didn't really pay

attention as to why.

In Massachusetts, the department of mental retardation has the bulk of

state allocated funds, as opposed to the deaf and blind commissions.

They did an in-house assessment right away, and they made sure that

all of 's nursing and therapies were in place and covered.

If you can imagine, I hadn't given a thought to any of that. But I'm sure

I would have within a few short days of her being home.

The hospital's " continuing care " office seemed to have organized all that.

One of the clinics at Boston was called the 'birth defects clinic'. They

have since

picked a more p.c. name. They were invaluable in keeping us informed, and

in telling us what the next steps were. (all the different specialities we

needed

to hook up with.) Although CHARGE was very new to most of the doctors,

multiple birth defects was not.

I got my hands on a pram-a carriage in order to get her and all her equipment

in and out of clinic visits. Staff thought that was great-a portable NICU.

I think I was in a blessed state akin to shock. You get picked up and

carried

along-and you just " do " whatever it is that you have to do, with a smile, no

less.

In that state, things work well.

in Ma. (, 21 yrs)