nerve-wrecking

Unpredictability, I have always hated it but now even more so. Since coming home September 8^th, 2011, Wyatt has had three colds and managed them very well without needing more than Tylenol and additional snuggle and sleep time. Even with teething he’s been doing pretty well. He has the Smurf’s marching in more often when he’s in a lot of discomfort but again, Tylenol is our best friend for that also. So we were starting to think that it was safe to assume Wyatt has a pretty strong immune system because he’s been stable for 4 months now. Damn it. How dare we assume anything? Just when you think you’re in the clear and you have a good handle on things, CCHS has a way of throwing you an unexpected curve ball. Wednesday night we were woken up a couple times by Wyatt’s pulse ox alarm. That’s nothing too unusual since it can get a bad signal if he’s moving or it may be an indication that the pulse ox probe needs to be changed. So as long as it comes right back up, it’s no big deal. Then on Thursday, he woke up from his nap only to fall back to sleep in his bouncy chair which he has never done before and the desats started again. So we checked his CO2 because if he trends higher than usual it can be an early indication that he might be coming down with something. His CO2 was around 25 while awake which is a little low but it’s his normal on the current ventilator settings. He also wasn’t showing an increase in his body temperature. So we thought maybe he’s just really tired, he is still teething after all. To be on the safe side, as usual we went through the protocol of attempting to stop the desats by checking the waveform on the pulse ox machine, checking the pulse ox probe, changing the probe’s position, suctioning and then changing the trach. By the time he was taking his afternoon nap however, his SATS randomly started bouncing up and down again between 90-98. It wouldn’t last long and they’d come back up but usually he stays stable at 98-99 awake and asleep, plus he was sound asleep and not moving. It didn’t make any sense and it put us on high alert – more so than usual. Thursday night, we again had the occasional desatting but only briefly so even though it was all really weird there was no indication to intervene. Giving Wyatt O2 unnecessarily can raise his CO2 levels so we didn’t want to jump the gun. But then came Friday at which point it was happening both while he was sleeping and awake and the time frame of the desats was increasing. Now he was bouncing only between 89-94 and his lip color was changing. Fantastic. Way to get my adrenalin going. This is nerve-wrecking. Taking him to the hospital wasn’t really an option. There were no other symptoms at the time so aside from giving him O2 and keeping a close eye on him, there was nothing else anyone could do. So I started with 0.25L of O2 but quickly had to increase to 0.5L O2 which seemed to stabilize his SATS at 98. His CO2 trend was now up about 10points and by that afternoon, his sleeping heart rate was higher than usual up in the 140s-150s, his chest sounded coarse and he kept coughing but no secretions could be suctioned out. The Pulmonologist put him on Prednisolone twice a day for 5 days to reduce the possible inflammation in his airway. What exactly caused the inflammation, no one really knows.

Today he seems to be doing a bit better. He’s not coughing as much, his CO2 is back in his usual range but he’s still really sleepy and only wants to be held. He’s napping right now and staying between 96-98 without O2. I’m keeping my fingers crossed that we’ve passed the worst of it. So here’s to the unpredictability of CCHS which forces us to always stay on high alert. Cheers!