50%

I think that Jaime has spent his whole 2 1/2 years of life on the border, 50/50. Jaime's sleep study was no different....in true Jaime Trost fashion, his sleep study came back showing that he has obstructive sleep apnea, but he's exactly in the middle as to treat or not! Jaime's sats didn't go below 93% which is AWESOME and his co2 level never went above 36, also awesome! However, he did stop breathing a few times an hour. So, what do you do with that info? Putting him on o2 or cpap wouldn't benefit him because his levels are stellar! The only way to "treat" his sleep apnea would be a tonsillectomy, but even that may not cure it because he has such bad tracheomalacia (floppy airway). A tonsillectomy poses a significant bleeding risk and the only way to treat the tracheomalacia is with an airway surgery that Jaime will NOT be having. So, once again as with his everything else, we get to play the "wait and see" game! (I HATE the wait and see game!) They are using this as a "baseline" study, basically throwing away the first one he had when he was 9 months old because that one showed him desatting. This is Jaime's new "normal." We hope with time it will get better. We'll have a repeat study or be more aggressive with treatment (tonsillectomy) only if symptoms get worse. In the meantime, we'll continue to have sleepless nights...at least now we know why, so I guess that's something?!?

Here are a few pics from Jaime's sleep study last week.

As for other Jaime news...he has FINALLY been scheduled for his manometry studies in Cincinnati. Jaime will be admitted just after the new year to have his bowels cleaned out and have his upper and lower manometry studies done. He'll be in the hospital for 3 days to complete the studies. Manometry is the recording of muscle pressures within an organ like the esophagus and colon, so hopefully this study will give us some digestive answers. For those of you interested in learning more about the studies, you can follow these links. http://www.cincinnatichildrens.org/health/c/colonic-mano/
http://www.cincinnatichildrens.org/health/e/esophageal-manometry/
Of course, they will probably come out "borderline" like everything else of little Jaime's! I just hate putting him through all of these tests and still not getting solid answers. I will say that since we started Jaime on Nexium, the vomiting has significantly improved....he's even eating a bit more. Like he's able to eat almost a whole pancake now, instead of a baby size one. This is HUGE! He still continues to have bowel issues, though. We can't get a good balance between constipation and diarrhea. Just tonight I had to give Jaime a glycerin suppository because he couldn't "push" on his own...then of course, there was blood in his stool because of pushing! Just a vicious cycle, yet so "normal" for him. This is why we can't potty train him (although he has peed in the potty a few times this week :).
Final Jaime news, he starts his third year of Synagis shots tomorrow. The home care nurse will be here bright and early to give him his shots (he has to get 2 because of the big dose). Then, he'll have speech therapy followed by the Early Childhood Specialist and speech therapist from Broadmore. I think that I'm going to send him there next year for preschool if his doctors clear him to go. Jaime's still technically "home-bound," he hasn't been cleared to leave the home for therapy or to attend toddler classes or group therapy sessions. We can go to the pool, but it's just us in there. It's so weird because when we do leave the house to go to the store or even for a dr. appointment, Jaime usually cries, he's a home body and HATES leaving the house. He certainly doesn't know how to act in public.

Before I end this post, I'd like to ask that all of you keep Jaime's CDH friend, Kamryn in your thoughts and prayers. Kamryn was born in June of 2009, Stephanie and I were pregnant together, she had twins, Kamryn (LCDH) and Brooke. Kamryn reherniated and had surgery today. She's in the hospital recovering. Many people think that once the kids get discharged from the NICU that their CDH ordeal is over, that is simply not the case. There's a constant worry, in Jaime's case, it's literally been one thing after the next. In Kamryn's case, she has done so incredibly well and now this! In my experience the affects of CDH last a lifetime. It's a HORRIBLE birth defect, we need much more awareness and research on it so that kids with it won't have to go back to the OR to be repaired again like Kamryn or Jaime...and all of the other kiddos who made several trips to the OR. I think it gets harder and harder as they get older, so please keep Kamryn's parents and sisters in your thoughts and prayers, too. Thank you, I know they will appreciate it.

46 days until Christmas! (Just saying! ;)