Blessing in disguise

As a result of Bryce's three hour seizure in December of last year we were referred to a pulmonologist that specializes in sleep disorders and seizures that occur while sleeping. This year Bryce has had a total of three sleep studies. After the first one I swore that I would never put him through that again. I had said it would have to be a life or death type situation before I would even consider it. You would think by now I would know to watch what I say.


The first sleep study showed that (in the 3.5 hours that Bryce actually slept) he had seven major events. So seven different times Bryce stopped breathing for an average of 30 seconds with his oxygen saturation dropping into the low 70% range. Of course this was very concerning to all of us. Bryce also had blood work done showing he was deficient in iron and ferritin which led to another daily medication. Iron and ferritin contribute to sleep so adding the supplement was necessary. Bryce was also diagnosed with central apnea. Central apnea is very different from sleep apnea in that the brain doesn't tell his body that he needs to breathe. There is no "cure" for this diagnosis but there were treatment options. It was thought as a result of the central apnea and the significant events that Bryce has it could have led to the seizures that he has had in the past while sleeping. Oxygen therapy is often used but we would need another sleep study to see what oxygen level would be needed. Therefore we were on for sleep study #2.

After the second sleep study they found that Bryce needed 1/8th of a liter while sleeping. With that level of oxygen Bryce had three significant events but if they increased up the oxygen then it was too much. By having too much oxygen it caused his CO2 level to increase which is like poisonous breathing. So 1/8th it was and we were to repeat the sleep study in another 3 months. Almost every night Bryce would take the nasal cannula off. We have a video monitor where we could see him pulling at it. Many times it ended up in his mouth and he would chew on it or it would be across his eyes or forehead. Many occasions I would go in and fix it and threaten that if I had to come in there again he would be in big trouble. He would still pull it off, look right into the camera and start belly laughing. The 4 year old attitude just shining through (but I have to say I love it). Most mornings we would go in and the oxygen would be off and he would be completely wrapped in all the tubing. I am not kidding when I say that we would go back at least 5 times or more to put the cannula back on. Cohen even helped us out - he had his flashlight that he would shine right in Bryce's face. He would come out and announce that Bryce had once again taken off the oxygen. He is such the little helper.

Once the 3rd sleep study came around (and I swear it was the worse one yet) we were ready just to get it over with. The point of this sleep study was to see if Bryce was doing okay with 1/8th or if it needs to be increased. We went through the sleep study and I asked the following morning where the oxygen level ended up. The RT informed me that it was never turned on. I was actually furious. The point of the study was to see what he looked like at his current level. I left angry - I felt it was a waste of time and now we would need to do it again... There was NO WAY I would have him do another one this year. So once the time came to meet with the doctor to discuss results I went in aggravated. I told her that I couldn't understand where the communication was missed. She agreed she had no idea where they would have gotten instruction to not turn on the O2.



Then she went on to tell me about the results.... Bryce had ZERO spells - he didn't stop breathing - his oxygen saturation stayed normal the entire night!!! I was in shock. Talk about being completely surprised. So surprised that it took a while to register what she was saying. She determined that Bryce no longer needed oxygen at night. So for almost a week now he has been sleeping much better (with the exception of a few nights). I am so thankful (for once) that an error ended up being a good thing this time. I just hope that I never go through what I woke up to on December 15th last year.