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Old 09-09-2009, 04:06 PM
Jonahsmom Jonahsmom is offline
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Default What does a vent "feel" like?

I mostly lurk here. I have a 12 year old son with Down syndrome who was trached as an infant. It was for only 4 months, and it was a nightmare. We went against the doctor's wishes in having the trach removed when we did... but we couldn't get him (Jonah) out of ICU and off the antibiotics/steroids /breathing treatments. We spent 4 months in PICU and Jonah never acclimated to his trach.

Fast forward to today. Jonah is 12, has been decannulated for 10 years. He struggles with severe sleep apnea and hypercarbia. The only option left to us is to trach him and ventilate him during sleep. He won't wear PAP of any sort. We've tried for over a year....and his pulmo finally suggested we take a break....Jonah has had 5 different surgeries in an attempt to "open up" his airway, but it's just not working.

If we were to trach Jonah it would only be for nightime venting. I don't know alot about the vent....could some of you help me out?

What does it "feel" like to have the vent breathe for you? If he won't tolerate PAP, is there a chance that he wouldn't tolerate the pressure of the vent? Does a vent HAVE pressure, or is it more like low flow oxygen? How long does one have to have the new trach installed before you can safely cap it? For daytime, speaking, etc. Jonah's would be capped. But I don't know if we can do that immediately, or if the trach site needs to heal first.....

Anyone with an older child, trached permanently? Any insights or ideas for me? We meet with pulmo/ENT in a few weeks, and we need to have made our "final" decision by then....

Thanks guys!

Anji Edge
Mom to Sarah, Jacov, Jonah and Levi
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  #2  
Old 09-10-2009, 06:48 AM
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nad_d nad_d is offline
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i never use cpap but was vent few monthes.
the most diturbing is to be connected to a machine and not be free.
the doctors fix the pressure of oxygen, so there is no different breath with or without a vent.

all ur childrens have Jewish names - nice.
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Old 09-10-2009, 07:01 PM
Christamae Christamae is offline
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Hi! I am 23. I used a bi-pap with a nasal mask from ages 9-11 and then switched to a ventilator with nasal pillows. At age 17 I had to get a trach and now I use a ventilator while sleeping and occasionally throughout the day.

Being ventilated through a trach feels a lot different then a mask. With a mask all the pressure of the air can be overwhelming, claustrophobic, and frightening. You generally adjust after about two weeks. You also have to coordinate the swallowing.

A trach will only be significantly different if it is cuffed. With the cuff up all the air is pushed into the lungs. I don't think it is uncomfortable once the settings are right (especially rise time and sensitivity). With the cuff down talking is possible. Generally people can talk after a few days.
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Old 09-11-2009, 04:35 AM
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cherienz cherienz is offline
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I can't talk for my 5 year old BUT he could never do CPap and ViPap via a mask. It was awful. You could always see his distress - have you tried to put a mask on? You had the trache early , was that only in hospital?

Mitch has overnight ventilation via a trache and has been trached since one year old. The breathing, eating, smelling and speaking process is different. If your almost teenager is used to doing these (how severe is the Downs?), then these things will change a bit I think.

We have 02 at night and vent. It is a big obstacle, because it means having someone (carer. nurse) in our house EVERY night and if not them - us awake all night. It gives Mitchell a good sleep and rest and better energy for daytime. This winter we have not had an acute admission to intensive care - this is a big thing for us. It is better that he has ventilation overnight and this is the reason he has a trache, no airway prob.

I think consider whether it will make a difference to the day (and or your night).

The negatives of trache in general, no beach, no water over your head, general lack of knowledge from the public on the things that can go wrong.

Feel free to ask more questions.
Cherie
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Old 09-11-2009, 02:05 PM
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Good luck with your decision. It must be a challenging one, to say the least. There are others on the board whose kids need a trach for night venting and are capped during the day. I'm sure they will pop on and answer from their perspectives as well.
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Old 09-11-2009, 02:20 PM
Jonahsmom Jonahsmom is offline
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Thank you for all the input! Cherie, if you don't mind, I have a few more questions. I would say Jonah's is mildly/moderatly affected by the Down syndrome. His heart/breathing issues are truly more of an obstacle than the DS. Yes, Jonah was trached in the hospital....out of 10 weeks, we were home only 3 nights, and then airlifted back to the hospital for respiratory distress. It was a frightening, frightening time....

OK. For my questions. Sorry if this sounds dumb, but I honestly was shocked by you saying that Jonah would need a nurse or someone with him through the night. From reading here, I realize that lots of kids DO need that. I guess what I was thinking, possibly in ignorance, is that since Jonah would only need the trach/Pap/Vent for sleep.....that we wouldn't require nursing care. I mean, he sleeps with a pulse ox now, and we respond to those alarms. This isn't coming out right....Jonah's airway is OK. If he were to come unplugged from the vent, he wouldn't be in an EMERGENT situation... more than likely the alarms themselves would wake him, he would take a big breath, and be OK. That's the way it is currently....the alarm rouses him to the point that he's sitting up in bed, looking at me by the time I get to his room. And his sats are are on their way back up...... are there other "dangers" inherent to a trach? I guess maybe a plug? But, even if he were to pull the trach out, I guess in my head I'm thinking it wouldn't be a huge deal....since he would be awake, and his airway would be OK.... hmm... lots more questions to ask at our appointment with pulmo and ENT in Cincy next month!

Wow. I'm not certain that either my husband or myself have thought of the possibility of nursing care, or one of us staying awake all night. That would be doable....I could do it, and nap during the day time, while the kids are in school.....

One other question. Again, I apologize if this sounds stupid, but I truly don't know the answer. From my research, I'm concerned that Jonah would not be able to eat by mouth. Currently he aspirates thin liquids (as a result of his last airway surgery) and we thicken everything to nectar consistency. But I was reading that a cuffed trach could solve the aspiration problem. But I don't know if he can use a speaking valve or even cap the trach with a cuff... if I'm understanding the "cuff" correctly..... any ideas on that?

Thank you all so much. I want to gather ALL the information that I can, to make the best possible decision for Jonah.

Anji
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Old 09-11-2009, 02:36 PM
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My son is on a vent 24/7 and we don't have night nursing. I'm usually up at least once a night just to check on him (I do not stay awake all night). If you are already used to listening for the pulse-ox alarm and have experience with sleeping with "one ear open", you are probably fine. If you can get night nursing, it would be nice just so you can get a good night's sleep. The other thing is when Jonah is sick and requires lots of suctioning, the nights can be very long - it's nice to have some help a couple nights a week so you can get some rest (providing you have competent nurses that you are comfortable with -- not necessarily a guaranteed thing). But, in my opinion, night nursing is not a mandatory thing.

Best of luck.
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Old 09-11-2009, 04:07 PM
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lynn lynn is offline
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I also do not have any night nursing- I sleep very lightly, with a baby monitor to "louden" the alarms for me to hear.

Is it necessary for a cuffed trach? with the cuff inflated, you can not use the PMV or cap.. It is possible to leave it down during the day, and fill at night, but is there a reason for the cuff?

If you are using a cuffed trach- plugs can be very dangerous- there is no other airway other than the trach.. My son has had his trach since one mo of age, and he is three, so I can't tell you what the vent feels like (he is nonverbal).. We are currently using the vent for night after being vented 24/7 for the past 2 1/2 years.. Joseph does not use a cuffed trach.. I was told that the cuff can do damage to the trachea if they are used.. and most kids dont really need a cuff unless the trach is not a good fit.

Joseph is currently 100% oral- he has never had a gtube placed. He only is drinking bottles of formula (because of sensory issues not "eatting" issues-) and is clearred to eat anything by mouth -- The taste is different- and I do notice he eats much better and will try more things with the PMV on.
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Old 09-11-2009, 04:40 PM
Jonahsmom Jonahsmom is offline
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Lynn,
I don't know if the cuff is necessary or not....I'm just trying to figure out how we could guarantee no aspiration, so that a feeding tube is not necessary. One big life changing event for Jonah is about all we can handle at a time!

I was researching, and read that the cuffed trach would prevent aspiration. I haven't discussed the "type" of trach yet with his docs. That will come next month when we meet, but I wanted to do my homework before I met with them. I didn't know that the cuff could damage the trachea, but I guess that just makes sense....any pressure against the trachea long term could cause damage....

Thanks for all the input. It is truly helpful, as we are gathering all the information we can before we meet with the doctors. We are about 4 hours from Cincy, so I can't make repeated trips....and it's my experience that phone consults and emails just don't answer all my questions!!

Have a good weekend!

Anji


Quote:
Originally Posted by lynn View Post
I also do not have any night nursing- I sleep very lightly, with a baby monitor to "louden" the alarms for me to hear.

Is it necessary for a cuffed trach? with the cuff inflated, you can not use the PMV or cap.. It is possible to leave it down during the day, and fill at night, but is there a reason for the cuff?

If you are using a cuffed trach- plugs can be very dangerous- there is no other airway other than the trach.. My son has had his trach since one mo of age, and he is three, so I can't tell you what the vent feels like (he is nonverbal).. We are currently using the vent for night after being vented 24/7 for the past 2 1/2 years.. Joseph does not use a cuffed trach.. I was told that the cuff can do damage to the trachea if they are used.. and most kids dont really need a cuff unless the trach is not a good fit.

Joseph is currently 100% oral- he has never had a gtube placed. He only is drinking bottles of formula (because of sensory issues not "eatting" issues-) and is clearred to eat anything by mouth -- The taste is different- and I do notice he eats much better and will try more things with the PMV on.
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