Progress

An amazing thing happened yesterday.  After Kai's bath I must have forgotten to plug his oxygen back into the ventilator; either that or the RT may have inadvertently disconnected the oxygen cord when he was checking the ventilator.  When we transport Kai around the house, we use the portable tanks, but when he is in his crib area, he is connected to the concentrator, which pulls room air and converts it to pure oxygen.  I had his pulse/oxygen monitor connected and running, and Kai was in the mid-nineties for his oxygen level, so I didn't know anything was amiss.

The respiratory therapist came over about two hours after his bath to inspect the ventilator and make sure all was working correctly.  He messes with a lot of things and has to move the ventilator bag all around to get to the filters, so it is quite possible that the oxygen tubing could have come out then.  The ventilator won't alarm for a disconnected oxygen tube.  It was during his visit that J noticed the oxygen cord wasn't connected to the ventilator, so he hooked it in.  We aren't sure whether the cord got knocked out during inspection or if I really did forget to plug it in.

After the respiratory therapist left we decided to try an experiment and turned off his oxygen altogether.  He went over an hour and a half before the nurse came (we had a date night) and we turned the oxygen back on.  He averaged 94 (he just has to be at or above 90), and the lowest he has dropped to was 88 when he coughed, but he bounced right back up.  It would be SO exciting if we could get him off the oxygen completely!  We will have to see how he does sleeping, but this is wonderful progress!  Before his ventilator, Kai was needing three liters of oxygen a minute, but lately he has been below half a liter.

On Thursday we were able to pick up Kai's adapted stroller.  I love it, but Kai is not so certain.  He lasts about five minutes at a time in it before he gets fussy.  Hopefully, as he gets used to it a little more that he will like it better.


The adapted stroller has room for all his equipment, and even comes with an attachable canopy!  It is a lot heavier than his previous stroller, but collapses fairly easily, and is even designed so that we can transport Kai in the car while he is still in the stroller (we would have to make our vehicle safe for doing that, however, so we will be keeping him in the car seat).

This picture was taken right after his bath, so he is wrapped up in a towel and happy, but it gives you an idea of how nicely everything fits!

Another exciting thing has been happening--we have been hearing cooing sounds from Kai!  Just before his surgery we started hearing Kai making noises.  When we first started hearing the noises we thought something was wrong, but then we realized that he has managed to figure out how to make noise over his trach!  We were told that there will be a point when he will be strong enough to do so, but I guess we had given up on that possibility since when he is screaming we still can't hear anything.  There are certain adaptations that we can put on his trach for him make noises, but I don't know if there is something like that for the ventilator.

 We were able to get a video of him cooing before his surgery.  Of course, when we pulled out the camera he didn't coo as much, but we did manage to get a little of it.  Since Kai's surgery, we haven't heard him make any of the noises, but we are hopeful that he will start doing them again as he starts to feel better!