07/25/10 Steady Progress

Eli has continued to show slow but steady progress. He still have pronounced hypotonia but we think we might be making some strides with his apnea.

Over the last month, nights had become increasingly difficult because Eli simply didn't want to keep the BiPAP mask on. We were getting maybe 4 or 5 hours of sleep and Eli was barely tolerating the BiPAP during those hours. He continued to grow more and more restless. We soon got to the point where Eli was getting less than 4 hours of good BiPAP time at night so we had to start adding some BiPAP time during the afternoons. Needless to say this wasn't working very well. The good news is Eli continued to maintain his CO2 levels throughout this entire period so we were starting to wonder if we could reduce or even take him off the BiPAP.

Around the first week of July Patricia called the hospital and scheduled another sleep study for Eli. Eli's pulminologist, Dr. Makris, just about fell out of his chair when he found out. We had several wasted sleep studies while we were in the hospital and we vowed we'd never do another one. Well, times have changed...

A week later Patricia took Eli into the hospital on a Sunday night for the sleep study. The sleep study was done without BiPAP. Eli was on regular nasal cannual oxygen the whole night. Two days later we got the preliminary results. Eli had shown a significant improvement in the apnea and he was able to maintain his CO2 in the low 50's throughout the study and the blood work they did the next morning confirmed it. Dr. Makris agreed that we could take Eli off the BiPAP as long as we continued to monitor his CO2 level closely at home.

That was about two weeks ago and so far so good! Eli has continued to maintain his CO2 levels in the low 50's and he's getting more restful sleep. So are we! The net side benefit of this is we both feel Eli has had more alert and awake periods during the day. This was a very big step for us and we're hoping we can continue on without the BiPAP.

Eli is scheduled for his regular clinic appointment tomorrow so I'll post a little more about the sleep study and how he's doing after we get the results from his check up.