Ok. Lets start with Sawyer. The last I updated his MRI came back normal, which I rejoiced about, but the MRI results might not be accurate according to the neurologist that graded his sleep study on 10-19-2011. First, the entire reason we had a sleep study was because I was "claiming" that Sawyer was still having breathing problems in the night even after multiple surgeries to correct his condition. Since no one believed me they asked if I was willing to do another sleep study to prove he was in need of a CPAP and O2 monitor which I have been asking for since Sept. 2010! I agreed and a month later we were seen in the sleep center. The results were worse than the first sleep study which constituted his first surgery (supraglotoplasty) on 2-16-2011.
Results: Sleep Study 10-19-11
Cent. Apnea
6-9 secs: 8
10-14 secs: 5
Obst. Apnea
>20 secs: 1
Obst. Hypopnea
6-9 secs: 31
10-14 secs: 46
15-20 secs: 39
>20 secs: 62
"His lowest oxygen saturation was 76% and was <92% for about 3.5 minutes of the total night. Although his oxygenation was ABNORMAL he did maintain his baseline avg. 97% oxygenation 94.1% of the the sleep time. The drops came with sequential events in REM sleep (particularly of a CENTRAL nature)."
"Actually, as the child fell asleep, he began to demonstrate periodic breathing, which was a mixture of central apneas, and central and obstructive hypopneas, but which were so irregular and difficult to identify that it was quite hard to score with numerous events lasting less than 6 seconds. Of those that were less than 6 seconds, only those which were most clear cut were scored. Thus the child's breathing pattern particularly in the first part of sleep was much worse than these number reflect."
"Sleep was disrupted by these numerous events. The great bulk of the central events were very short, but the hypopneas ranged as long as 53.2 seconds in duration. Overall, this study is more abnormal than the child's first study."
Recommendations:
"Consider reviewing with neuro-radiology this September's MRI to look at the cranio-cervical junction to evaluate for a Chiari I malformation. The report comments that the brain stem looked normal so that issue has likely been address."
May L. Griebel - Neurologist in the Sleep Study Lab - Arkansas Children's Hospital
So after months of asking for a CO2 monitor (still don't know if they will give me one or not) and a CPAP machine. They are finally getting us a CPAP machine and evaluation. This will happen on December 20, 2011. A full year from the time of his first sleep study and 2 surgeries later. He has nothing left to be blocking his airway (tonsils gone, adenoids gone, tubes in ears, & supraglotoplasty).
On another note. Sawyer received the RSV shot on 11-15-2011. So far so good. Everyone else in the family has been sick and he hasn't been sick yet! Really hoping this lasts and he's protected this winter!
