Brady/ Desat after trach

[Shobhana]

Hi,

I am a mom of a former 24-weeker preemie called Sahana, who is now 6
months old. She got a trach a month ago to bypass subglottic stenosis.
Until she had the tracheotomy, we were always told that Sahana has good
lungs. She has been close to room air all along. Currently, Sahana is
still on the vent after the tracheotomy- PEEP of 6, pressure support of
10. We are close to straight CPAP and are hoping to be off the vent in
the near future.

While we are disappointed that Sahana is still on the vent, our main
concern is the fact that she has episodes when she clamps down (the
doctors call it a bronchospasm), desaturates and has bradycardias. She
comes back within a minute after being bagged. These episodes happen
once in 2 or 3 days usually in the wee hours of the morning. Some
triggers may be mucus in the airways, water dumping or crying really
hard. I am surprised that she has these episodes after the tracheotomy,
but did not have them while she was intubated. It seems like the trach
has made her more unstable; while most babies do much better after a
tracheotomy. Bronchoscopy/ Laryngoscopy has revealed that she has no
tracheomalaisia. I wonder if there are others who experienced a similar
increase in brady/ desat episodes after a tracheotomy. I am looking to
all of you to help me figure out the underlying cause of these episodes
and how we can deal with it, other than trying to prevent the triggers.

Thanks,
Shobhana

[Isaac'sMomandDad]

I just wanted to say welcome!

I'm not sure what is causing the episodes, I hope you find some answers though.

Lara

[alizesmom]

I wish I could help but my kids were long post-trach before coming to me. I did want to wish you a welcome. I would outright ask the doctor your question if I were you. Karen

[drct1245]

When we met Ayden at 6 months old, he had also had a trach for about 1-2 months. But he was trached b/c of his lungs, so he was on a vent too. He was a 26 weeker and had and still has severe BPD. At 6 months of he too was having his blue spells and doing the same thing, but his were at any time of the day. About 7 months of age is when they stopped and by 9 months, when he came home from the hospital, he never had any. Does Sahana have any heart issues? Was she in the hospital all the time, so they would know if she was having these spells pre-trach?

I know many people have mentioned that their preemie kids clamp down when they are mad and they end up being bagged.

Welcome to the board...

[Shobhana]

Thanks for the responses. Sahana has always been in the NICU. We are moving her to a step down unit tomorrow. I did ask the docs these questions and they say that this is common with trach babies. I just can't imagine bagging my baby once I come home; but I guess I have to get used to it :-(. She does not have any heart issues.
Shobhana

[suzanne2545]

My son started breathholding at about this age. He desats into the 30s sometimes- though mostly we can't get the monitor on him to see. He can go days and not do it and then there are days where it seems like he does it every two hours.

He's 20 months now and freshly decannulated. Thus far, our doctors seem non-plussed by the situation and everyone suspects he will outgrow it. All we do is try to head it off at the pass (we've gotten pretty good at seeing it coming) and then if it is coming and we can't stop it we make sure he doesn't hurt himself by falling down.

Not sure if this could be the case at all with your little one but I'm throwing it out to you.

Welcome to the group.

[sandra]

Brian did that for a long time. We bagged him at home a lot. He would desat when he pooped, got mad, and reasons we couldn't figure out. He outgrew it, but it took time. I wish I could give you a better answer. We had the ambu bag next to us at all times at home. If we changed rooms, that came with us.

Welcome to the board.

[haltec]

Hello. I just wanted to welcome you to our group.