Sleep Study

Last week Kai went in for a sleep study.  The purpose of the study was to assess how he is doing overall, and to see if lowering his vent settings would be a possibility.  We set up an EEG along with the sleep study to monitor his brain activity, since the seizures we have been seeing have mostly been while he sleeps.

He did pretty well during the sleep study--he slept from about 12:30-3:00, but from 3:00-5:00 he was very upset and refused to be consoled.  Needless to say, not much sleep was accomplished from that point on.

Since the sleep study is considered outpatient, we had to bring ALL of Kai's stuff.  His humidifier, feeding pump, stands, food, pulse-ox, etc.  It was a lot to haul and the room was pretty small.  The "bed" for J (I stayed home with the girls), was a chair which "folded" out.  Basically the cushion extended.  J was very irritated that there wasn't a rocking chair to help soothe Kai while he was fussy. 
As you can see, it wasn't the most comfortable get-up for Kai.  Each wire you see is attached to his head by a different probe.  Frankly, it's amazing he slept at all, but they were able to get the data they needed from the few hours he did get.

The results are in, and I have to say, as I listened, my heart sank.  Kai has been doing so well, I had gotten my hopes up about lowering his ventilator settings, and possibly weaning him off the vent.  The news wasn't bad--he is doing fantastic with the settings they have him on now, so the settings will remain the same.  His CO2 levels and PH are right where they should be.

As for the EEG, we need to follow up with neurology (oh joy) to understand everything, but they noted sharp waves which are suggestive of focal cerebral disturbances and seizure tendency.  They also said that his background activity is slower than expected for his age.

We had an appointment with neurology a couple of weeks ago, and the doctor said that with seizures, the more you have, the more your brain and body get used to them, the more you are likely to have.  Eeeps.  We haven't seen any noticeable seizure activity recently, so hopefully he isn't having any that we aren't catching.

ENT also took a look into Kai's ear (again), because his ear has been actively bleeding once again.  They discovered granulation tissue in his ear!  The reason it's bleeding is because the granulation tissue is being irritated.  So Kai is in extreme pain from his ear.  Poor little guy.  There really isn't much we can do--we have some ear drops and we are giving him Tylenol for the pain.   It is hard to see him suffering so.  It breaks my heart.  His ear just refuses to heal.  Since March he has had somewhere around eight ear infections, and now granulation tissue.  Whatever the ENT did when cleaning his ear really messed his ear badly.

Hopefully we will be able to get his ear cleared and have him feeling better soon.