Any guidelines for getting off of oxygen?

[Seth and Hannah's Mom]

I will never claim to be an expert on oxygen but I am an expert on Seth. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif He has only been off of oxygen for about 2 months (after 4 1/2 years with it. He came off only when his title volume on the vent was increased. I don't know if your child is on a vent though so that may not be helpful. I would think that as long as his sats stay up, I would leave it off. I know your fears though. My husband pushes him more than me. I'm always nervous. Those first few days without it were really scary to me. What should have been very exciting!!! Seth has a cold right now and had to go on about 1/4 liter night before last. He sats better when he is awake too. Keep us posted! Gina

[Ann]

Jack too came off his oxygen (after 3 plus years) when his vent settings were adjusted. Â*There was no weaning required, it was just a matter of him being able to move air more effectively. Â*I know that doesn't help you much Val since Matthew is not on a vent. Â*The other big difference being that Jack doesn't have the lung issues like Matthew and the other former preemies on the board. Â*So, why the heck am I even posting here Â*http://www.tracheostomy.com/iB_html/non-cgi/emoticons/wow.gif

I guess, I would just say that the thing to watch is his heart rate because I do know that if he has to work harder to keep his sats up without the help of the O2, his heart rate will reflect that. Â*You obviously don't want to trade off one set of problems (O2 hassle) for another (over-worked heart). Â*I have no clue as to why some kids need just a "puff" of O2 to keep their sats up, but Jack was one of them, as was Gaithy (if I recall correctly). Â*The other thing I would say, in response to Gina's post, after Jack was off his Os and then got sick and needed to be back on oxygen temporarily, I would absolutely freak out and rush him off because I thought he would become dependent on the oxygen again. Â*Just to let you know, that didn't happen - he always came right off after getting over whatever it was he had. Â*If Matthew is being well ventilated (his lungs are healthier and he is stronger), than a cold or other illness that may put him back on his Os temporarily doesn't necessarily mean he'll be stuck on oxygen again. Â*Just my experience. Â*Also, Jack sats better when he is asleep - go figure?

Good luck!!

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif
Ann

btw - you most recent "album" of pictures are awesome. Â*The Fall countryside pictures are breath-taking and something we never experience here in the wild-west. Â*I also love the pics of Matthew and his mom and dad!

[hcs_mom]

Not an "expert" by any means as Hannah is still needing a "whiff" of oxygen...but here is what we've been told.

Our goal is to keep Hannah's sats above 92. Hannah's lungs are still healing, so for her to have to sat above 95 is nearly unrealistic.

As we wean, I keep a close eye on her sats, of course. I almost expect her to fluctuate at first, but if she drops and sustains below 90, then I know she's just not ready. Close on on her color too. Heart rate. We've experienced a slight increase in heart rate from time to time that is usually short lived. Her doc says a "sustained" elevated heart rate is cause for concern. And watch for increased work of breathing: retracting, huffing and puffing, etc. I'm sure these are all things you know.

So, as you wean, if you don't notice anything, wean away!!! Some kids come right off the O2 once the wean is started, others, like Hannah, it is a slow process. In Hannah's case, we are to start with taking her off for periods during the day, but put her back on at night. Once we feel she is "ready", we will be able to start weaning at night as well.

It sounds like you are certainly on your way. Follow your instincts like you have been. You know Matthew best and can read his signals better than anyone...docs are there "guidelines", but if you feel that he's ready/not ready, follow that.

Best of luck. For us, it has been a *SLOW* process. Hannah was on 1/2L back in November 2003 and is just now slightly below an 1/8L. We can take her off for 20-30 mins at a time, then I freak out and worry that we are stressing her (even though she shows no signs of distress) and put her back on. I just don't want to fail this time. (Maybe I need to re-read my words of advice to you!).

Best of luck. I think you are doing a fabulous job!!!
Jennie

[akabot]

I have always been kind of aggressive with weaning (ventilator, oxygen, etc.) The reason for that is that the nurses and docs in the NICU were always so aggressive with weaning and generally it worked out fine for them. Corey's home care nurses and I always argued about weaning because they were scared to and I knew it was right and had doctors orders to back it. I don't think that they were used to taking care of kids that actually got better.

Anyway, as long as the saturations are good, heartrate is fine, color, no retractions, etc. there isn't any reason not to wean as tolerated. Unless the doctor feels that Matthew might have a special reason to go slowly. Corey hung on to 1/8 liter for about a year until we figured out that we were giving him too much humidity through the mist collar and that was making him saturate lower. Once we figured that out, he hasn't needed oxygen since.

Our pulmonologist is very aggressive with weaning and at first it frightened me, but he has always been right. So I guess I can't argue with it. A week and a half after Corey's decannulation, he made us get rid of Corey's oxygen, pulse ox, and all other trach equipment. It freaked me out because I was not ready to get rid of the pulse ox, but Corey has done great and once again he was right. We were just hanging on to it for our comfort. Corey's sats were 96 and above constantly once decannulated and he hadn't needed oxygen in almost six months.

So I would say go for it and see how he does. You might be surprised.

Amy

[lac]

Hi Val!
Our pulmonologist (who recently lets us to take a position out of state AHHHH) was always very conservative with Collin. That is what worked best for him too. Collin never liked change much (or was that me not liking change much?). Anyway, the slower we went the better. Gave Collin as well as myself time to adjust.

In the mean time my suggestion would be, since winter is approaching keep him on oxygen through the night. Oxygen is good to let him rest and to help him grow. Then re-evaluate in the spring. Just check with the doctor to make sure keeping him off during the day (as long as his sats are good) will be ok. We only put O2 on Oxygen when he had a cold and at night. And for me I always found that getting reassurance from the doctor that what I was doing was ok, made me relax a bit more....

Good Luck and keep me posted ok!!

[Laurie]

We were being very cautious on weaning Evan, and finally he was on such a trace amount that our pulmonary doctor said don't give him any O2 unless sats are below 90 and RESTING HR is above 150! I think she was trying to jump start us out of our caution. She also encouraged us to stop checking Evan's sats during the day - instead assess him by his activity level and work of breathing - if we suspected a problem, check sats, otherwise, just let him work it out. It worked. He came off O2 one night and never looked back. We have not used O2 (except for a few hours post bronch) since June 6.

Laurie