Since our pediatrician didn't send all of Nolan's relevant medical records to the Cleveland Clinic, we requested specific records from his ENT and GI doctors. Yesterday, I received a bill in the mail.
Nolan's ENT charges $0.75 per page to fax medical records to other specialists. Nolan has 50 pages of relevant ENT records, so the bill comes to about $40 for faxing records to the Cleveland Clinic. I only wish it wasn't so difficult to get his medical records in the first place, because then we could have sent the records on our own and saved about $40. I'm not going to fight it - we only have one shot at getting this genetics evaluation done, so I mailed off the check yesterday. Hopefully the ENT's office will get them faxed in time.
Nolan's appetite has largely returned, so we are dropping DuoCal into everything we can. Fortunately, he loves macaroni and cheese, so hopefully we can get our little 29-pounder back to his baseline.
In the meantime, my frustration level is about 10,000 on a scale of 1 to 10. Our respiratory therapist is worse than useless. She had one C-Pap mask that is designed for children - the Mini Me mask. Unfortunately, the headgear and design of this mask is poor - it is only attached by two straps, so it frequently falls down and off his face during the night. This leaves the head-net and tubing around his neck - clearly, this cannot be very safe.
I looked online and found another mask designed for children, and I sent the respiratory therapist the link. She called us back in and handed me a mask - not the one from the web link I had sent her. The one she handed to me was an adult petite mask - it is too large for Nolan. She also gave us petite adult nasal pillows (these insert into the nose) with an adult head-net. It just doesn't fit the little guy.
Nolan has been asking for his "mask" at night - and he has bonded with the Mini Me mask. If only this mask would stay on for more than 30 minutes at a time, it would work out well. The overall design of the mask retention system is the real problem.
Hopefully the "Child Lite" mask that I ordered will arrive soon. Once we find something that stays on his face through the night, we'll be able to really tell if the C-Pap is working or not!