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Niff
04-23-2009, 12:06 PM
When we brought Mackenzie home from the NICU the day before yesterday she sounded clear and fine.

Then yesterday I woke up and the nurse had noticed increased work of breathing. At around 8:30am Mac had a coughing episode and turned blue. We suctioned her and got out a nice plug, gave her O2 and she came back up. She was still working really hard. In the hospital she was CPAP peep of 4 so that's what we had her on her home vent, but a couple of the RTs were concerned that the circuit was larger so they suggested adding a pressure support of 10 to compensate. Yesterday I decided to dial in the pressure support and she definitely responded well to it.

We go to her pedi appointment (all this was yesterday) and Mackenzie was working really hard. She was requiring a lot of O2 and her respirations were in the 80s and 90s. The pediatrician didn't think it was a problem and said she settled out if you left her alone. You could hear Mac weezing and grunting around her trach. He gave us an RX for pulmicort and xopenex.

We came home and gave Mac the first round of xopenex (which he did Q4-Q6 depending on her needs). Her lungs didn't sound as bad but they were pretty nasty and she was still working really hard. She had significant retractions (as she had at her pedi appointment) and respirations in the 80s. We decided to take her to the ER.

We go, calmly explain that we have a child in respiratory distress, and two nurses come out. I go with them to the back and at this point Mackenzie has taken a huge turn for the worse. She was purple, her sats were only at 6%, and we were doing everything we could to figure out what was going on. We're not entirely sure what happened, but I think it may have been another plug.

Right now she's in the PICU and stable on vent support. They're planning to wean her down to CPAP again and they feel it was an issue with moisture (the home equipment not providing enough). I feel that it may have been a combo of that and not having the proper support to start with on her home vent.... and possibly an infection since she had gram neg rods in her trach aspirit.

Here's my concern: when we have appointments at our Children's hospital (like pulmonary, ENT, nephrology, etc) they will be 2 hours away and an all-day event. If her HME isn't providing enough moisture what else can we do? At home we have a heating element inline with her circuit and can just turn up the heat (and drain water out of her circuit every 30min), but that's not portable.

saywhatyouwill
04-23-2009, 12:15 PM
how scary. x to mackenzie.

you could try a saline neb? would that be enough moisture? not so sure if you can get portable ones but you must be able to.

JWorthington
04-23-2009, 12:25 PM
We have had to use saline nebs with Sam and they work well. you could also try instilling a little saline into the trach, that should keep any plugs at bay. I hope Mack is ok:hug:

Julie x

Alex's mom
04-23-2009, 12:40 PM
Poor baby. Uggh. I'm so sorry this happened so soon after coming home. And sats of 6%? I wish I could give you a hug. That must have been terrifying.

My little one likes her humidity and she didn't like being off the humidity with just an hme. It has slowly gotten better over time. She is vent dependant and there is rarely time at home that she is not hooked to the vent w/out humidity. Over the last few years we have been able to increase her time out. Now we can spend the entire day on the travel vent w/hme and still be ok. I do add saline and ambuu it in occasionally when she seems dry. In the winter when the air is drier and I know we'll be out for a while - I take our small neb with us and give her a saline neb, I think it definitely helps. These nebs come with a car adaptor, or you can purchase a adaptor to fit your car so it can be plugged in.

I wonder for Mackenzie if cpap is enough support. Would it be beneficial for her if she spent some time of the day with some pressure supported breaths?

Niff
04-23-2009, 01:04 PM
Poor baby. Uggh. I'm so sorry this happened so soon after coming home. And sats of 6%? I wish I could give you a hug. That must have been terrifying.

My little one likes her humidity and she didn't like being off the humidity with just an hme. It has slowly gotten better over time. She is vent dependant and there is rarely time at home that she is not hooked to the vent w/out humidity. Over the last few years we have been able to increase her time out. Now we can spend the entire day on the travel vent w/hme and still be ok. I do add saline and ambuu it in occasionally when she seems dry. In the winter when the air is drier and I know we'll be out for a while - I take our small neb with us and give her a saline neb, I think it definitely helps. These nebs come with a car adaptor, or you can purchase a adaptor to fit your car so it can be plugged in.

I wonder for Mackenzie if cpap is enough support. Would it be beneficial for her if she spent some time of the day with some pressure supported breaths?

How many saline nebs do you give over a period of time?

The RT from our DME and I were thinking that she might be okay with straight CPAP on our home equipment (with heater inline), but with pressure support of 10 on our portable (with HME inline) - moreso to overcome the resistance of the HME.

kadiera
04-23-2009, 01:58 PM
unofficially, we've been told it's sometimes helpful to put saline in the HME. no idea how much or how often. I'd think a saline neb would be more controllable though. Back in the day, I got my nebulizer meds separate from the saline, and the saline came in a metered bottle, over the counter - one ml per squirt. That bottle is *still* in my closet, still going strong, and I've been tempted to use it on Alex when things get wierd.

The humidity needed will vary with the weather too. So...this summer you might be ok, whereas right now with furnaces running, it's not so good.

You might also suggest they do a trial with her on the HME before they discharge her again (over several hours) to make sure they get a good batch of settings for that....

Alex's mom
04-23-2009, 02:32 PM
How many saline nebs do you give over a period of time?

The RT from our DME and I were thinking that she might be okay with straight CPAP on our home equipment (with heater inline), but with pressure support of 10 on our portable (with HME inline) - moreso to overcome the resistance of the HME.


We were never given a guideline so I'm not sure if there is one. I'm sure it varies with each child. We would give it halfway through the time we were out and we would attach it inline w/the vent tubing.

Hope
04-23-2009, 02:36 PM
I know we, and I think many others here on the boards, were advised against using saline in the trach at home -- anywhere from "never" to "rarely". I used it daily with Shelby however. Especially in the mornings when she'd been on her HME all night. And probably most days, 2 - 3 times throughout the day (varied lots). Most times I'd drop a few drops on the cath and then suction her out with the moistened cath, but sometimes I'd drop a couple of drops inside the trach and suction. Saline nebs, like others said, would be great too.

What you went through sounds really scary -- so sorry!!

Hope

kirafaesmom
04-23-2009, 02:41 PM
We have the very same "portability" issue with Kira's Mist.....she simply can't travel the 20 minutes to the hospital/clinic, be off it for the visit, then the trip back. The HME is not enough. So, what we did is buy one of those jump start battery packs that have 3-prong plug-ins as well as a DC port. We then put that, and the FisherPaykel in a rolling suitcase. Hook up the portable O2 at 2 litres of flow for the FisherPaykel (they have refillable chambers so you don't have to hang a bag...). It's cumbersom, but it works. Feel free to PM me if you would like more details/pics of our set up. Also, if you have Apria, I can give you the order/M#'s....

Ainsley's Mom
04-23-2009, 05:36 PM
We don't have quite the same issues with desats and episodes so I'm not sure it would be enough to do the trick, but I find that when wearing an HME it eventually gets moist, right? That's the point of the thing is that the exhaled moisture gets collected in the filter and then moisturizes the inhaled air. So sometimes when Ainsley is drier I pre-moisten the HME with a few drops of saline ampule so she gets moisture right away rather than waiting for her body to moisten the HME. I would also suction with a few drops of saline prior to putting on the HME just to make sure the cannula is clean and not "dry".

Do you have a nurse that rides in the back on the way to appointments? With Ainlsey we can hear as she starts to get dry, a kind of whistly sound, and we suction with saline. I think you might need to use saline preventatively every 20 minutes or so if she is really prone to drying out and getting plugs. That's quite scary. And with these episodes I would always use the oximeter while in the car unless you have someone right there watching her.

bryantem
04-23-2009, 05:51 PM
Addisyn had a couple of episodes when she first came home too. It was determined that her episodes were due to an infection (pneumonia and RSV). I do believe that it took her time to adjust to the new equipment once she got home because there wasn't as much humidity.
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KJKK8437
04-23-2009, 05:54 PM
When you see your pulmonologist, talk to them about the xopanex. With laryngomalacia, you might be causing Mac to have to work a little bit harder with xopanex because it might be relaxing the airway a little bit too far while at the same time it is mobilizing secretions and making the lungs sound better. For most kids, mixing xopanex with atrovent will counter this effect. I know this isn't precisely what you asked, but I thought I'd mention it.

We never had continual vent use (only post op). So, I really am not knowledable bout this. BUT, it would not surprise me if Mac has more trouble on CPAP after xopanex and might need some pressure support to help hold the airway open. CPAP might not be enough. Not all kids respond significantly in this way, but a lot of them do. I found the RTs to be surprisingly ignorant that pediatric albuterol/xopanex use can have this effect. So, while you are working through the settings, keep an eye on this one as well. I think the effect lasts up to an hour, but I'm basing that on Alex, so it may not be a general rule. And, maybe Mac doesn't react that way at all.

Also, if moisture is what you really think the problem is, then xopanex nebs can have the effect of drying some kids out. (Not mine, but we were constantly told about it, so its somebody's kid.) Yes, they mobilize lung secretions, so that can help with plugs, but I wonder if it sometimes aggravates a moisture problem. We never did saline nebs, but during the few times Alex was really dry, I thought about using xopanex plus a separate saline neb. Unfortunately, when I was advocating for that, we were in the hospital, and the pulm said "No. Not necessary."

Oh - and here is why I really started writing. We ALWAYS had mild gram negative rod growth in Alex's trach aspirates. I would recommend getting the ER/hospital to give you copies of the culture results every time you go in. If you do, you might well be the first one to know when the trach growth is abnormal for Mac. The ER/hospital docs won't know her from one trip to the next, so they may overreact to the cultures. Just my opinion -- worth what you paid for it.

Niff
04-23-2009, 06:01 PM
We don't have quite the same issues with desats and episodes so I'm not sure it would be enough to do the trick, but I find that when wearing an HME it eventually gets moist, right? That's the point of the thing is that the exhaled moisture gets collected in the filter and then moisturizes the inhaled air. So sometimes when Ainsley is drier I pre-moisten the HME with a few drops of saline ampule so she gets moisture right away rather than waiting for her body to moisten the HME. I would also suction with a few drops of saline prior to putting on the HME just to make sure the cannula is clean and not "dry".

Do you have a nurse that rides in the back on the way to appointments? With Ainlsey we can hear as she starts to get dry, a kind of whistly sound, and we suction with saline. I think you might need to use saline preventatively every 20 minutes or so if she is really prone to drying out and getting plugs. That's quite scary. And with these episodes I would always use the oximeter while in the car unless you have someone right there watching her.

There's always someone in the backseat and her pulseox is always on (unless we're moving her form her room to the car and vice versa). I called our Trach RN to ask her what to do. Hopefully she'll get back with me tomorrow. :(

lynn
04-23-2009, 06:05 PM
Unlike what others have said, we were told by our hosp to always use the saline ampules with each and every suction. We were also told to use the saline 3cc ampule in the nebulizer every 3hrs if Joseph sounded dry(his cry gets very loud and strong when he is plugging up) There is a big adjustment to the home vent and it can take a while for the body to reject/want new settings on the home vent- that is why our hosp requires the kid to be on their vent for 2 solid weeks before being discharged- sometimes the settings would last a matter of minutes till Joseph started desatting and other times he could be on a setting for hours(even a full day) before he decided he didnt like it and reject by desatting and turning blue. It took almost a full month before we could be discharged because of the rejections and each time settings were changed, the two week count started over. (not all of what you asked, but this was our experiences- could be why she is not liking now)
Hope you can figure out what Mac likes and get home soon!

lil' G's mom
04-23-2009, 06:06 PM
We don't have quite the same issues with desats and episodes so I'm not sure it would be enough to do the trick, but I find that when wearing an HME it eventually gets moist, right? That's the point of the thing is that the exhaled moisture gets collected in the filter and then moisturizes the inhaled air. So sometimes when Ainsley is drier I pre-moisten the HME with a few drops of saline ampule so she gets moisture right away rather than waiting for her body to moisten the HME. I would also suction with a few drops of saline prior to putting on the HME just to make sure the cannula is clean and not "dry".

Do you have a nurse that rides in the back on the way to appointments? With Ainlsey we can hear as she starts to get dry, a kind of whistly sound, and we suction with saline. I think you might need to use saline preventatively every 20 minutes or so if she is really prone to drying out and getting plugs. That's quite scary. And with these episodes I would always use the oximeter while in the car unless you have someone right there watching her.

This is what we do with G..... G also likes to take his HME off alot so he dries out, so in the am and sometimes thru out the day I will put a few drops saline done trach and suction out.
Also how often are you changing trach? G is usually once a week, but if it's really dry then we do it as often as every other day as needed.

FightingForFaith
04-23-2009, 06:17 PM
I have been told that a PEEP of 4 is useless. At that point, it's really no support at all. At our hospital, a PEEP of 6 is as low as they go, the next step is just oxygen.

We had a similar experience with our daughter being sent home from the NICU on not enough support. Having her readmitted and put on more support felt like a set-back but really it was a step in the right direction.

Best of luck,
Jen

lynn
04-23-2009, 06:32 PM
Yes, I was told a peep of 5 is what a typical lung holds- so ours should always be higher than that if we are trying to hold pressure in the lungs.

kshell
04-23-2009, 08:25 PM
I would try saline nebs. You may also have to play around with the temp setting on her humidifier. We had to play around with it alot when we first got home. As Natalie got stronger she was off on her portable vent all day with her HME but did have to work up to it if you know what I mean. I hope you guys are in and out and get back home soon.
Karen

bryantem
04-23-2009, 08:39 PM
--------------------------------------------------------------------------------

When you see your pulmonologist, talk to them about the xopanex. With laryngomalacia, you might be causing Mac to have to work a little bit harder with xopanex because it might be relaxing the airway a little bit too far while at the same time it is mobilizing secretions and making the lungs sound better. For most kids, mixing xopanex with atrovent will counter this effect. I know this isn't precisely what you asked, but I thought I'd mention it.

We were taken off Xopenex for this reason alone. Consequently, within a week of discontinuing her Xopenex, her noisy fast breathing subsided. What I believed to be wheezing was actually stridor. Our pulm said people look at him crazy when he tells parents this, but I swear there was a big difference.
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Kira
04-23-2009, 10:11 PM
I am curious why doctors say not to put saline down the trach. I'm not sure what we would do without putting saline down Jaci's trach. She has a plug almost every day after wearing her passy muir valve all day, and sometimes we have to use 2 saline vials to get the plug out (the plugs are not usually big, but sometimes they are). I do not notice any adverse reactions to the saline vials down the trach, so my recommendation would be to use the saline vials (with doctor's approval). I would love to hear your opinions as to why the saline vials down trachs are bad. Maybe I am doing something wrong, but I at this point do not have another good alternative.

Gretchen(Celia's mom)
04-23-2009, 10:37 PM
They do make portable neb machines. Your best option might be to do Saline neb the whole way to your appt.'s, I don't think there is a imit on saline nebs as it is just moisture, no med.

Hope
04-23-2009, 11:13 PM
I am curious why doctors say not to put saline down the trach. I'm not sure what we would do without putting saline down Jaci's trach. ... I would love to hear your opinions as to why the saline vials down trachs are bad. Maybe I am doing something wrong, but I at this point do not have another good alternative.

I don't think they are bad, and I used them daily with Shelby.

But in my training in the hospital, the RT's told me "rarely" or even one of them said "never or almost never" to use saline. Although one did hint at what was to come, with kind of a wink and a nod he said something along the lines of "things might be a little different when I got her home".

I think they expected Shelby to lay around all day connected to the mist collar, like she did in the hospital. Maybe that's the big difference because her nurse and I pretty soon worked her into an HME, with the mist collar at naps and at night (and by about month 6 of being home, I discontinued even that). That's all I can figure -- RT's thought she'd get enough moisture through the mist collar, but once the mist collar isn't being used 24/7 we had to start using saline. I think they also worried about introducing/flushing germs into the trach via saline. Shelby never had a trach infection, BTW.

Hope

Niff
04-23-2009, 11:25 PM
They do make portable neb machines. Your best option might be to do Saline neb the whole way to your appt.'s, I don't think there is a imit on saline nebs as it is just moisture, no med.

Mackenzie has chronic lung disease and is on Lasix to help keep her lungs dry... so too many saline nebs could be really bad. I'm getting in touch with a trach RN to figure things out.

drct1245
04-23-2009, 11:45 PM
Here's my concern: when we have appointments at our Children's hospital (like pulmonary, ENT, nephrology, etc) they will be 2 hours away and an all-day event. If her HME isn't providing enough moisture what else can we do? At home we have a heating element inline with her circuit and can just turn up the heat (and drain water out of her circuit every 30min), but that's not portable.

You can get an inverter for your car (it plugs into your cigarette lighter and then it has a normal plug-in) and plug the heater into it for the trip there and back.

We were told a peep of 5 is normal and therefore @ 4 there is no support.

bryantem
04-24-2009, 12:41 AM
I think I would have the nurse sit back there with her and when she is sounding dry to just give her a few drops of saline. Did they take a chest x-ray to rule out pneumonia? Her symptoms sound just like Addisyn's when she was sick, but the pneumonia didn't show up on the x-ray until the next morning. Her breathing was pretty labored and she was retracting pretty bad.
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kharmasmama
04-24-2009, 12:56 AM
That must've been awful! I'm sorry :hug: I hope she's doing better now. When we go out, especially when its really hot or really cold, Kharma gets dry and we drip a little saline into her trach which seems to keep her plugs at bay.

Alex's mom
04-24-2009, 08:19 AM
Mackenzie has chronic lung disease and is on Lasix to help keep her lungs dry... so too many saline nebs could be really bad. I'm getting in touch with a trach RN to figure things out.

I don't know the answer to this so maybe someone reading might know? Is there a difference between being connected to a mist w/ a collar or being connected to a neb? And can a neb be given with sterile water instead of saline?

KJKK8437
04-24-2009, 09:03 AM
I am curious why doctors say not to put saline down the trach. I'm not sure what we would do without putting saline down Jaci's trach. She has a plug almost every day after wearing her passy muir valve all day, and sometimes we have to use 2 saline vials to get the plug out (the plugs are not usually big, but sometimes they are). I do not notice any adverse reactions to the saline vials down the trach, so my recommendation would be to use the saline vials (with doctor's approval). I would love to hear your opinions as to why the saline vials down trachs are bad. Maybe I am doing something wrong, but I at this point do not have another good alternative.

The American Thoracic Society has recommended that the practice be discontinued because of the risk of flushing contaminants caught in the secretions back down into the lungs. While you suction much of it up, some of it is bound to be missed, so what the body has worked so hard to bring up, saline can push back down. As has been mentioned on this site a few times, regular saline should be easily absorbed by the body, but you are risking introducing water straight into the airway.

We never had to use much of it becase Alex was so wet, so I'm not a good source of information. Our main hospital is so opposed to it that I didn't even learn about it until the head of our nursing agency mentioned it. Frankly I was so shocked at the suggeston that I said, "NO!" Having never heard of it before, it sounded alarming to me -- to put any form of water down into his airway? (It didn't matter to me that it was the same mix of salt and water as in our body. I just couldn't get past the idea of maybe putting fluid into the lungs.)

BUT, our LTP hospital had no problems using saline to suction out the ET tube. As I understood it, the ET tube was so much longer that there was more time and space to retrieve the saline.

Finally (like you really wanted this much trivia, right?) Our hospital once told me that they no longer put saline on their list of "tricks" because they prefer that if parents cannot retrieve a plug after ordinary suctioning in a short amount of time, that the parents move immediately up to replacing the tube. They did not want anyone to waste time in an emergency, KWIM? Now, of course, that is a standard answer that assumes you've never met a parent and assume they don't know how to distinguish between a kid who is struggling a little bit and a true emergency. We all know how wrong those assumptions can be. :D

I'll say that we never had a confirmed plug, even aftr Alex dried out. But, we did have some times where a tube change improved sats or work of breathing. The tube seemed perfectly clean when I looked at it, though. I never figured those times out.

kshell
04-24-2009, 02:21 PM
[QUOTE=KJKK8437;191291]The American Thoracic Society has recommended that the practice be discontinued because of the risk of flushing contaminants caught in the secretions back down into the lungs. While you suction much of it up, some of it is bound to be missed, so what the body has worked so hard to bring up, saline can push back down. As has been mentioned on this site a few times, regular saline should be easily absorbed by the body, but you are risking introducing water straight into the airway.

We never had to use much of it becase Alex was so wet, so I'm not a good source of information. Our main hospital is so opposed to it that I didn't even learn about it until the head of our nursing agency mentioned it. Frankly I was so shocked at the suggeston that I said, "NO!" Having never heard of it before, it sounded alarming to me -- to put any form of water down into his airway? (It didn't matter to me that it was the same mix of salt and water as in our body. I just couldn't get past the idea of maybe putting fluid into the lungs.)




So CHOP also says to never use saline staight down the trach. We do use nebs and when we are out and Natalie seems very very dry we have used a drop on occassion. I think that the practice is changing and varies from each hospital. Our teaching was also if you think there is a plug change the trach do not mess with trying to get it out.

I also think that the practice may differ with children whith BPD or chronic lung disease. Natalie had severe BPD in addition to her airway issue so that complicates the issue. At the hospital that Natalie was born their practice was to use saline with every suction. CHOP felt that this practice did contribute to Natalie's chronic infections. As I said the practice seems to differ and we have used a drop or two when out for the day.

Karen

cherienz
04-25-2009, 07:25 AM
Consider me rude - but your hospital/docs should make sure her home CPAP is working well before discharge. Are YOU an ent/rsp DR? YOU know your child but you are you getting kicked out of hospital? You might want to get home - know we did. But you must simulate HOME as good as you can. The air in the hosp is different, but I would not want my child to be at 6% sats. Do/Did you have an ambu bag??? Can't remember from your discharge list. Safety first.

Hope Mckenzie is doing better.
Cheers Cherie