Re: ??Tracheostomy

[Guest guest]

Hi ,

ended up with a trach that was due to a weak windpipe, to put it

simply. The rest of him is low tone so why not his trachea. 's trach

was an emergency one sort of. He was having trouble breathing, he was put

in the hospital for all sorts of tests, then was sent home when nothing was

found. That weekend got so upset his airway collapsed and he " died. "

I had to do CPR on him and told the doc do what ever it takes as I never

want to see him laying on the floor all blue and gray again! When they put

the trach in that's when they found the weak spot. They hadn't done a

bronch in the hospital. Within a few weeks of us getting out of the

hospital we were back in and went on BiPAP. About a year later he

went on the vent. Breathing for him was hard and he needed almost constant

suctioning. I was so happy to see breathe better when he got the

vent. He loved it as well. He immediately relaxed and just let the vent do

the work. He can still breathe on his own, but if he's off the vent for

more than about 15-30 minutes his breathing gets shallow. He has a lot more

energy now!! He had asked to stay on his BiPAP machine after a hospital

stay for pneumonia (every year he was in the hospital with at least one

pneumonia). We decided on the vent as it's more portable and rugged than a

BiPAP machine. His setting are basically the same as his BiPAP with the

exception of a set rate of 14 BPM. He has yet to be sick with hardly a cold

let alone pnuemonia since he got his vent. Considering his disease, he's

relatively healthy.

I won't kid you and say it was a piece of cake at first. I was

overwhelmed and out of my comfort/denial zone. That could have been

because it was an emergency and I had to do CPR. But like you said about

the g-tube, it became routine and now I couldn't imagine without all

his stuff. We call him RoboBill because of the g-tube, trach, vent and

Baclofen pump. We went though night nurses but they all fell asleep so

we just got rid of them. sleeps in our room so I can hear the vent

easier. We have no help at all and manage just fine. You will be

overwhelmed with all the equipment at first, but you will quickly figure out

what you need and don't need. With the vent at night doesn't need

mist or that loud compressor. He doesn't need O2 so we don't need a

concentrator. I use a babywipe to clean his stoma (when I remember) so

there is no need for all the trach cleaning stuff. uses a chain for a

trach tie and that doesn't need to be changed unless he gets bigger so no

boxes of icky ties around. We change out the trach every 3 weeks or so.

We have 3 we rotate. 's is custom made Bivonas. He likes those

because they are soft silicone instead of the stiffer plastic that Shiley

uses. uses an HME during the day so we do have those. And of course

the flex adapters that connect the circuit to the vent. On the trach list

there is (or at lease was) an RT who invented the Bridle. It's a velcro

thing that holds the circuit to the trach so it doesn't come off. I don't

need to worry about that too much because if the circuit does pop off

can still breathe and the vent will alarm. We also don't use sterile

technique for suctioning. Clean hands, most of the time , is it. Since

doesn't need to be suctioned near as much as before, we don't reuse

the catheter. We did before. We'd suck water through it and slip the end

back in the plastic sleeve. Here is an excellent site for trach info

http://www.tracheostomy.com/

Well, before I overwhelm you anymore, I will stop. Please e me

privately and I will help you any way I can.

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

Hi everyone, need your input--any tracheostomy users out there?

[Guest guest]

, I really feel for you, it can't be easy watching Cassie weaken. Two

years ago, we were told that Chelsea would probably need a trach due to the

same issues you are facing now. Her swallow had deteriorated to the point she

could no longer take in enough calories and was getting pneumonia. The

(well-meaning) PICU drs. and surgeons told us the gtube would protect her and

keep her from getting sick to a piont, but she was probably weakening and

would eventually need a trach.

Fortunatly, thankfully, she has not weakened, but improved. I can't offer

advice on your tough decision, but I can tell you what we have done to help

improve her strength. We have been doing chest pt on her at least twice

daily, up to every 4 hrs when sick. She also recieves inhaled

Flonase(2x's/day) and Albuterol(as needed). Also nasonex spray and Claritin

for suspected nasal allergies. I think these meds are mostly preventitive,

but she does tend to be snotty(which slides down her throat, not out the

nose). The Albuterol does wonders when she is congested. I strongly believe

the chest pt and suctioning has improved her cough. It was once very weak and

inneffective. Now we sometimes get " flyers " =) Her ot once commented she

wanted Chelsea to be able to spray her in the face with her cough, and

Chelsea has demonstrated she can now do that! The constant suctioning

prompted her to cough when she would not on her own. She used to have a

chronic gurgle, but it has improved dramatically and only comes on when tired

or ill. Chelsea also sleeps on a slight incline to help thing drain better.

She has been able to maintain good 02 stats with these measures, and is

actually much more stable then when first monitored(after her initial

pneumonias). She takes 0.3lph 02 while sleeping for sleep apnea. She used to

regularly desat to the 80's, with 0's, due to a wad of phlegm or bad

positioning. I have noticed now she stays well into the mid 90's, even when

needing a suctioning.

We also feel that the supplements she takes help a bit as well. We noticed a

mild increase in stamina and less lethargy after the introduction of first,

Carnitore and then, CoQ10. We also put her on DMG last Apr, and have seen a

noticable increase in her energy and ability to tolerate therapy and

exercise. Chelsea's conditon has seemed to slowly improve with the various

'little' things we do for her. Talk to therapists, particularly speech, about

what can be done to improve her lung capacity. We are waiting to get into

speech therapy for just that reason.

The gtube was a tough decision, I think a trach would be much tougher. But

Sue's story was enlightening. It's just when it's happening to YOU, it's so

much harder. I hope all goes well, and things improve for Cassie. Please

don't hesitate to ask any more ?'s.

Krisitne, Chelsea's mom(non-specific mito)

[Guest guest]

We are at the same place as you. will not tolerate the bi-pap

blowing in his nose. He started trying it in October and just can't.

One thing I did not see you mention is the " turtle " shell that our

doctor mentioned. She said it is out of current favor but there is a

plastic and a canvas version of the iron lung. is still so

upset about the bi-pap that he does not even want to try the shell.

is on the 0-2 concentrator at night and has a suction machine.

We have met some kids/adults who say the trach. is the best thing

that they did and some who say the increased maintainence can't be

believed. I am right where you are!!

keep updating as to your decision!!!

Thanks

Twana

-- In Mito@y..., " RALPH KEOGH JR, " <mkeogh@w...> wrote:

> Hi everyone, need your input--any tracheostomy users out there?

Cassie is dealing with labored breathing because of weak muscles that

are continuing in that direction. So, now, we are faced with the

decision as to how we should deal with this. Her lung specialist

said we have four choices--(1) the iron lung, (2) the use of the Bi-

Pap and (3) consider a tracheostomy OR we can do nothing. The choice

of the iron lung we don't think she will tolerate it at all, she

can't stand a turtleneck hugging her neck, so I doubt she will

tolerate the collar of an iron lung, plus she wants to be turned

constantly through the night because of body stiffness. We have

tried doing the Bi-Pap, but she refused to wear it at night,

therefore the doctor switched her to an oxygen concentrator and the

use of pulse oximeter at night, but this will no longer due because

of the increased weakness. So that leaves us either to do nothing or

try the trach. Doing nothing--I can't see us doing that or to even

watch Cassie struggle beyond what she is dealing with now. So that

leaves us the trach. I was wondering what the ups and downs can be

with it. I've been reflecting back on how it was when we were trying

to decide about the G-tube. I can remember how we hated the thought

of doing this invasive procedure to her body and that it would lead

to some permanent changes. But, today, I know how much it has helped

her and how much easier it is then to try to struggle to get anything

in her and dealing with the NG-tube, which I don't want to ever go

back to. So, with this in mind, I'm hoping we can find a comfort

zone with the thought of what this decision will mean--placing a

foreign object into her body again, and this time it will be very

visiable. She will hate it because of the visibility and the

invasion to her body. She was upset when she saw the scare on her

ankle from a biopsy they did on her nerves. They took a small sample

when she was under for her first back surgery. Her level of

intellect has placed the deicision on us, because she does not have

the ability to look into the future to weight what impact her

decision may have. She has expressed her dislike for the Bi-Pap and

she agrees that the iron lung will not work for her--she has such a

strong gag reflex that whenever anything or person touches the area

of her neck beneath her chin, she will gag. I hope this give you

enough input to go on to help give some insight. The doctor stated

that we will need to make our decision soon, because now Cassie is

prone for pneumonia. Found out that the thick mucous saliva is

saliva collecting in her mouth and is seeping down to her throat

causing coughing and coking from it. We recently received a suction

machine to help deal with this.

>

> Thanks for any help in regards to this big decision.

>