Leak with ventilator causing problems

nana · #1 08-24-2008, 04:35 PM

Hi, all. Elijah is my 9 yrs. old grandson. This is his second trach, but first time on a ventilator. He is just on the ventilator at night. The ventilator has been driving me crazy. I finally got a doctor's order, so I could have a heated circuit. Before that, I was getting up every 2 hours with water in the tubing etc. Now I am finding that the ventilator is not very effective due to his leak. He has an uncuffed Shiley. Since he is not on vent during the day, he uses PMV or HME during the day. He has aquatic therapy two times a week, and we cap off completely. I am afraid of a cuffed tube due to complications. Anyone care to share what kind of trach they have with a child around this age on a vent? Shiley or Bivona? Cuffed or uncuffed? Any other suggestions? I don't have a lot of confidence in our ENT. She seems a little dingy and doesn't seem to have a clue about Elijah's condition. I am going to ask for another now that I am having problems, but I would love to know what other people are doing. Thanks.

drct1245 · #2 08-24-2008, 04:49 PM

Leaks are very hard when you have a kid on a vent. Our son was under 2 when he was on it. B/c he was so young, they wouldn't even think of giving him a cuffed trach b/c it can cause some structural damage. I don't know what the age is, but hopefully Ann, Christamae, or Becky can chime in. Also if you search on cuffed trachs, I know there has been some talk in the past on it.
hope you can find some answers - sorry you don't have a Dr that you have confidence in... any chance you could switch? We love both our pulm and ENT and all the confidence in the b/c they really listen to us and talk to us - they don't treat us like some dummy.

Ann · #3 08-24-2008, 04:51 PM

I would suggest the Bivona TTS (tight-to-shaft). When the cuff is deflated it is flush against the trach tube. I think with a vent dependent child, it's almost impossible to not have a cuffed trach, especially at night when the child is sleeping. My son has a 5.5 Bivona TTS. Even when we inflate the cuff, we always make sure he has some airleak so the cuff is never touching his trachea. But, I'm constantly messing with the amount of water in the cuff for the very reason you mention -- the airleak causes the vent to autocycle and it's a challenge to get just the right amount of inflation in the cuff to stop the vent from taking on a life of its own. Good luck.

Here is the Bivona TTS with the cuff slightly inflated.

Mom2TwinsPlus1 · #4 08-24-2008, 06:01 PM

Emma uses a shiley, uncuffed with her vent. She has a pretty good airleak, only able to just barely keep her PIP at 20. But she sats so well the dr and I both agree not to upsize, because with the leak she is more vocal. Its not been an issue until the last week or two and we start getting the "low pressure" alarm about 5 times a day or so. I think its casued by position for her. We haven't had any autocycle issues at all. We have a humid chamber that heats our circuits but not the inline heater.

Jimmysmom · #5 08-25-2008, 07:44 AM

Jimmy is almost 9 and we have never had a cuffed trach and he is vent dependent. We too were concerned about the damage to the trachea and about over zealous nurses inflating it too much. At times at night we have a problem with the vent self cycling but usually a change in position of either Jimmy or the trach will fix it. Due to his leak we have the low min volume alarm turned off on his vent because of the leak he would get constant alarms. He's on a tidal volume of 260 and because of the leak at times the volume will read 30-40. I don't bother messing with position espcially if he is asleep and his sats are up, but if his sats get down to 94 then I pull out my bag of tricks and try to minimize his leak. This has worked well for us.

Take care

Anne

nana · #6 08-25-2008, 05:27 PM

Thanks for all your ideas. Repositioning does seem to help. The RT that comes with the vent came out and increased the sensitivity to 6 on Friday. (That also seemed to help). I called the pulmonary today, but he is out of town. His nurse and RT called me back and said turn the sensitivity back down to 2 and call the ENT for trach eval. I am waiting for them to call me back with an appointment. I requested another dr., a specific dr. that we dealt with when Elijah was in the hospital in April. We are waiting for them to get back to us with an appointment. I am worried that his CO2 is high because the vent doesn't seem to give him a chance to exhale. I am going to go back to just using the vent during the part of the night that he really needs it until I find out something. Thanks all.

nana · #7 08-25-2008, 05:30 PM

I am curious about the Bivona. Do you leave it cuffed all the time?

TommysDad · #8 08-27-2008, 07:39 PM

Tommy had a sleep study done because his vent kept autocycling and low min voluming. The solution...Bivona's TTS cuffed trach. We are under (and we make our nurses follow) very strict doctor's orders to only to inflate the cuff when Tommy is in a very deep sleep state AND when he starts to autocycle for no other reason than besides his LEAK. Tommy's ENT & Pulmonologist gave us specific orders for exactly how much that cuff should be inflated, and they stressed it should ALWAYS be filled with water/saline and NEVER to fill it with air because the water gives more than air. We were also ordered to NEVER INFLATE THE CUFF WHEN HE'S AWAKE!!! But that's our son & his ventilation needs.

We were also warned by ENT & Pulmonolgy to watch out for TTS trach vs non-TTS trach. The way you could tell was by the color of what we call the "waddle". Refer to Ann's picture. If the waddle is white, it's a TTS. If the waddle is blue, it is NOT a TTS. Unfortunately, Tommy has gone into the OR with his TTS trach and come out with the blue "waddle"

What's even more upsetting is these have all been ENT surgeries!!!

As soon as we notice this mistake, we change out the trach. Let me say the extra material around the non-TTS trach makes it very difficult to remove the trach, and that's with the cuff completely deflated!!!

Esties mom · #9 08-27-2008, 08:07 PM

we have that same trouble with estie, we tried the bovona trach but estie hated it even not inflated, i also position her. we have orders to go up on the sensitivity to 7 and title volume to 220 if needed. we also make sure her trach collar is on very snug

Ann · #10 08-27-2008, 09:02 PM

Jack used the Bivona aircuff (blue waddle) for about a year and I hated it, it was difficult to get in and it was like removing a small plant when we pulled it out and yes, you had to pull to get it out. We were told the opposite however - that the TTS is a pressure cuff because of the water in the cuff and there is more risk of damage with an inflated TTS than with the aircuff. In fact, Jack was switched to an aircuff (from a TTS)because of an area of erosion in his trachea from the trach tube. (we have since gone back to the TTS). Based on my experience, I think the aircuff does give a little more than the water-filled cuff. It's bothersome that we are being told conflicting information for the same trach.