monitoring decannulated kids

saywhatyouwill · #1 09-29-2009, 02:05 PM

does anyone??

i am very nervous at putting emily to bed and not being able to hear her monitor clicking. we have all our equipment until clinic in 6 weeks or so, and tonight i have hooked her up.

what have others done? i know the hospital would say certianly DON'T monitor, but it's a scary prospect.

KJKK8437 · #2 09-29-2009, 06:31 PM

I'll be honest, Clare, I thought about it. But our ENT convinced me not to. We were monitored in the hospital long enough for them to be sure. I just bit the bullet and put the monitor in the closet. After all, I'd been sleeping in his room at the hospital for days on end, and the thing only went off when someone was bugging him.

BUT ... and this is the big but ...

I still keep the baby monitor turned at full volume, and I still listen to his breathing. Sometimes I get up in the middle of the night to listen, and sometimes I go into his room to be sure.

Sad, I know. But Alex is the only child I have ever had (although not the only one I ever cared for). I don't know how to be any other way. One thing this journey did was take from me the simple faith that I could lay my child to sleep at night and trust that he would be fine until morning.

I'm hoping to get that back someday.

suzanne2545 · #3 09-29-2009, 07:02 PM

We also didn't monitor. We'd been on the peds floor for a week with no issues. We don't use a baby monitor but that is because we have sleep issues and I just sleep with him! LOL. Still!

You have to cut the cord eventually. How about putting her to sleep without it and then putting it on when you go to bed. Ease into it until you are confident!

Truth be known we own our monitor and we've only had it out once since Parker was decannulated and that was to spot check.

aydenava · #4 09-29-2009, 07:15 PM

I used the pulse ox for about 4 mo. after Aydens LTP,I was told he doesnt need it,but I DID!Its been 1 1/2 yrs now,no problems,but we still have his pulse ox for when hes sick,because his oxygen still drops when sick & it tells us when a trip to the ER in needed! Hey useing the pulse ox,didnt hurt & he was used to it anyway,after 5 yrs with a trach I just needed to be shure he was ok.................Angie

JacobKaden · #5 09-29-2009, 08:13 PM

OMG, I cannot imagine NOT using the pulse ox after decan. Jacob has been monitored since in the womb!

It is definitely going to be a tough withdrawal for us - do parents really put their kids to bed without any monitor???????!!!!!!!

cbissell · #6 09-29-2009, 08:25 PM

We used a pulse ox after Aaron single stage LTP and decannulation. This helped us to figure out that he had a complication that took several weeks to develop. Aaron's story here (scroll down to "Update - August, 1997")

For this reason, I think it's reasonable to at least do spot checks for a month or two for kids who have had reconstructive surgery. Some will probably disagree with me, but it was a very useful tool for us to have.

Niff · #7 09-29-2009, 08:50 PM

Oye.. I hadn't thought of when kiddos get decannulated and no longer "need" the pulse ox at night. I would agree with the weaning yourself down.

Ainsley's Mom · #8 09-29-2009, 09:15 PM

I supposed it's not fair for me to comment since we still have the trach but I know that if and when Ainsley gets hers out I will continue to use the pulse-ox until I've established that things are fine and then I'll stop after a few months. Funny really, considering that she typically sats in the 98-100% range and it never goes off (unless it's a false alarm) so I think I'm actually more comfortable with her not using it with the trach than I think I would be after decann.

drct1245 · #9 09-29-2009, 10:01 PM

Ayden has been decanned for a year and because of O2, we actually still have him connected. When he gets sick, he will more than likely need O2, therefore I feel that we cannot get rid of it. Does she need any O's when she is sick? I would be hesitant to get rid of it immediately, but we are pretty cautious... It's all a personal comfort...

Maybe start slow, like not connecting her for naps. (?) just a thought.

LKN · #10 09-30-2009, 08:43 AM

We used it for a few weeks after decannulation, but Nathan didn't like it! We do have a pretty high tech digital baby monitor in his room that I will NEVER get rid of...I like knowing that we can hear him if he needs us. Last week he asked to use the pulse-ox, and so he used it for 2 nights and then stopped asking.

I do check on him before we go to bed every night. He is very, very quiet when he breathes so I watch to make sure his chest is moving up and down. I'm sure I will always be nervous when he sleeps...the cost of having such a traumatic start in life.