Thursday, September 17

Oxy Hood Trial

On Tuesday, after Bryce's self extubation fiasco on Monday, we experimented with an oxy hood to see if Bryce was unable to sustain CPAP because his lungs are too sick or because his airway isn't allowing sufficient air to enter his lungs.

The way it worked was they disconnected Bryce's ventilator from his ET tube and then put a plastic bubble over his head. They pumped oxygen into the "hood" and waited to see if he immediately began to go down on how well he oxygenated his blood or not. He did not. This means that his lungs are not the issue, his airway is.

As you can see in the short video of the trial below, Bryce barely even noticed his ventilator had been taken away...

Unfortunately though, this means Bryce will be making another trip down to the OR on Tuesday to have an ENT scope all the way down his airway into his trachea both with and without his ET tube. Removing his ET tube is always risky because if they can't get him re-intubated when they need to he cannot breathe.

There are several ways this could end up on Tuesday. The ENT may see some extra fleshy skin in Bryce's airway that can be removed and help him to clear his airway to breathe without the ventilator. Or the ENT may see that there is substantial swelling of his airway due to being intubated for so long and send him back to the NICU to try a course of steroids to extubate him. Or there may be scar tissue or some other physical obstruction that only Bryce's growth will solve, in which case we will have a serious conversation with all of his doctors about a tracheotomy. There is also a small chance that something will either happen or be seen on Tuesday during the scope that will necessitate a tracheotomy be done right then.

With each of these possible outcomes on Tuesday comes a plethora of other possible outcomes as well in regards to how soon Bryce may be able to go home and what kind of care he may need when he does go home.

It's too much what if to go into here but needless to say we wait with baited breath.

Ultimately, we can honestly say that whatever is best for Bryce is what we want. If that means we live at the hospital for another year or that means we take him home in a month or two with a tracheotomy, ventilator and feeding tube than so be it.

It's funny how the second you have children your life ceases to be about you at all but completely about them. And even funnier how little we mind.

Here's Bryce sitting up today (with a little assistance) while he gets his CPT to help clear the pneumonia junk from his lungs. Yes, that hand is smacking him. That's his RT breaking up the secretions so they can suction them out. He usually loves it, as you can see by the look on his face here.

Monday, September 14

Par for the Course

In true Bryce fashion - completely unexpectedly - Bryce went ahead and extubated himself at 3:30 this morning.

Apparently he was swaddled and on his belly when his nurse left. His respitory therapist just happened to be walking by as he de-satted a little so he walked in to see what was going on. Bryce had flipped himself over onto his back and pulled out his own ET tube.

NOT ok.

But trying telling that to a cute-as-a-button, tiny little baby.

Unfortunately, he had not gotten his dose of steroids and no one had prepared the CPAP machine so there was frantic calling for his steroids stat, calling me to let me know what was going on and trying to get his CPAP set up.

NOT a great start.

But Bryce does things his way.

At about ten minutes until 6 this morning Bryce was reintubated. He struggled from the get go on 100% oxygen and just couldn't keep his airway open well enough to get good breaths. But as soon as he was reintubated he was back on meager vent settings and less than 40% oxygen.

The nurse practioner that reintubated Bryce this morning noticed that his airway was swollen and surprisingly contracted. She suggested that on his next extubation we go down to the OR to have an ear, nose and throat specialist (ENT) scope his airway for abnormalities. Maybe there is a physiological problem that can be fixed. Maybe the ET tube is serving as a stint for his airway and once it's gone he simply can't keep it open on his own. The ENT will be called to consult today.

Needless to say, we're all a little disappointed around here today. Parents, nurses and RTs alike. But there's always the relief that comes with seeing him comfortable and no longer struggling for air. We'll try to focus on that positive to get through the day.

Sunday, September 13


Bryce is noticeably better again today and extubation talks have resumed.

Currently the plan is to extend his antibiotics to ten days, an additional three from today. They've also given him a diuretic to help pull any excess fluid from his lungs.

He'll get the first of either three or six doses of steroids tomorrow and be extubated four hours later.

Please strengthen Bryce with your thoughts and prayers as he needs to get this tube out in order to get on the path to home.
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