CPAP after Decann??

[scm]

After another week of struggling to breathe at night, we brought Max back to the hospital Sat. night. Doctors are baffled by what is causing the difficulty. Chest x-ray was clear, and another bedside scope also showed no obvious obstruction.

They were ready to send him up the floor for the night, until he fell asleep on the bed in the ER. To be honest, he didn't look too much worse than what they had seen post-LTR, but I believe the contrast of him walking in all happy and fine, and the struggle once he fell asleep was dramatic. We got sent back up to ICU where he spent the night on CPAP. He was more comfortable immediately.

We hung around on Sunday because there wasn't anyway to get a home set up until today, but he is sleeping now and looks pretty comfy. His breathing is still far from perfect, but better.


Just wondering if anyone else out there needed CPAP after Decann?

[JWorthington]

Oh dear Christina, I'm sorry poor Max is going through this. Maybe he just needs time to adjust. Have they said he may need CPAP whilst sleeing? I'm sorry I have no advice, just sending lots of positive vibes across the pond.

Julie x

[alizesmom]

Poor Max. We aren't even near decan but Alize's doctor did mention the possibility that he would need CPAP during sleep (or even 24/7) if decanned. Karen

[My little figther]

I am sorry I have no advice but just want to send you some cyber hugs and that I hope that Max will get better soon
Michelle

[hcs_mom]

There is one other that I can recall, christyw, she doesn't really post anymore. Her little one was on CPAP for a while following decan, but I don't think she had surgery either.

I've been thinking about mentioning CPAP to her pulmo, just to see if he thinks it would help the situation for now.

I'm glad Max is tolerating it. This is a tough one for kids, because they must be able to tolerate the mask. My DH is on CPAP for sleep apnea...he said he would wake up (at first) and he'd feel like he was suffocating. He uses the nasal cannula delivery system.

Best of luck.
Jennie

[lac]

hey you! I'm glad max is tolerating the cpap. Watching him struggle at night had to be torture for you and your dh!

keep me posted!

[scm]

Originally Posted by JWorthington

Have they said he may need CPAP whilst sleeing?

Julie x

yes right how he is just using at night and naps.

The home set up is working pretty well. He cries and asks "why" when it first goes on, but after about 5 minutes settles in and falls asleep. It's a nasal mask that covers his whole nose.

Jennie- We dont really know what is causing the trouble, but I have noticed how great Max's sats and respiratory rate are while he's on it. It does give me a little peace of mind knowing we'll have this in our arsenal come cold and flu season. I'd definitley ask pulmo to consider this for Hannah! Maybe it might "break the cycle" when she starts to come down with something....keep everything nice and open to help w. clearance. Plus, the humidity is always a big help.

[TommysDad]

Only info I can offer is Tommy is sleep apnic now & on vent 24/7. If and when he EVER gets decanned, we were told CPAP is always an option. Hey! But at least it's better than a vent & trach for life. We'd take that

Have they done a complete bronch in the OR to see what's happening inside the lungs instead of just in the trachea & main stem bronchi

~Maggie

[haltec]

Poor Max. I hope he adjusts soon.

[Alethia]

Cristina, you must be feeling so beleaguered! It's been one thing after another for Max. It's good that they've found a way of keeping him more comfortable while he's sleeping though. It really seems as though something is getting too relaxed and floppy in his airways when he's sleeping. The CPAP is keeping it open. I hope it's a passing phase and that you don't have to put all that crap on him at night for too long.