*sleep study results are in*

We got the results back from Delilahs sleep study yesterday. To set this up for everyone Delilah started Neocate back at the first part of August and started Zegerid the first week of Sept. Since these changes she has done remarkably well with both her reflux and apnea. Her new pulmonologist set up a sleep study for 9/18 to see if they could catch any apnea episodes in their office. At this time she was doing very well and we, as well as her pulm, felt we would find nothing on the sleep study but wanted to do it since its non invasive and to hopefully rule a centeral apnea issue out. She went in with Scott for the sleep study and he mentioned to me after that she had a great night with no issues. I just knew we would get the results and all would be 100% normal and we would be no further along in diagnosing her.


Her pulm called and said that the results were not what he expected at all. She slept for a total of 9hrs 30min. During this time her average O2 level was 96.4% and the lowest it dipped was 87% (which is all normal) During the 9 hrs of sleep she had 3 obstructive apneas, 44 hypopneas and 12 central apneas which gave her an overall total of 7.7 apnea events per hr. The normal events per hr are <1.

I was at work when i got the call so i had the pulm fax over the results to talk to her pediatrician about them. She said the same thing as the pulm but also said that all along she felt as though nothing was wrong with her breathing and just thought the reflux was mild and would go away. She is determined to figure this out. She flat out said she has no idea what is causing all these apnea events and its very strange for her to be having central apnea when she is developing normally and hitting milestones on time.

I don't quite know what to think of all of this. Needless to say Ive had a rough day. I really truly thought the apnea was also related to her GERD and since the change in meds she has done so well (but we also had to d/c the monitor due to her strangling issue a few wks back) so i don't know how she actually is doing at night. Her pediatrician mentioned that if this was a "good" night for her shes worried about what her "bad" nights consist of. I don't know where to go from here, I feel lost and helpless and I'm worried that this will be an ongoing mystery for quite a while. And to think I was so hopeful that things were calming down. This is a huge setback for us but she is still not in pain from the reflux and is happy as ever.