Wednesday, August 17, 2011

Histories, DuoCal, and C-Paps - Oh, My!

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.

The mini-me mask (left), adult nasal mask, and adult nasal pillows

I am beyond frustrated with this process. The respiratory therapist is either lazy or stupid: adult masks do not fit 29 pound four year old children. On top of this, the home healthcare company charges $275 for these masks that don't fit. I ordered a pediatric mask off the internet - it was $99 with free shipping. Hopefully the company will send the correct mask, and we will have a solution for our 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!


xraevision said...

Oh my goodness, Leah! I am so sorry that you have been having all these worries and trouble. Reflux is a terrible thing. X's also flares up randomly. He will be fine for weeks and then suddenly gag for two hours one night and, of course, I prop in up in bed and lay awake beside him. I too am totally exhausted. So, my heart goes out to you. You've been such a great blog friend, especially lately. It is beyond kind of you to help me out when you are experiencing your own frustrations. Thank you for your support! I hope Nolan's ridiculous mask issue gets sorted out soon! xxx

julieking79 said...

Hi, my name is Julie and I have a little girl who was born with CMV. She has bilateral cochlear implants along with some other medical issues. Right now we are trying to figure out what to do about her staring spells. She has a 24 hour VEEG at Children's hospital in Birmingham but the neuroligist said it wasnt seizures. That was great news but we still dont have answers. She is in first grade and her aid tells me she has several dozen of these spells a day. Did you guys ever get an answer about your son's staring spells? I am grasping at straws trying to help my baby but I don't know what else to do.

leah said...

Oh, Julie- I am so sorry she has staring spells. We never did get an answer to Nolan's spells. His 20 minute sleep deprived EEG was "normal," but the neurologist watched the video and stated that Nolan had "unexplained unresponsiveness." Not much help there. We never did figure it out - the staring spells have mostly disappeared, but we do occasionally see them (very rare now). They did state we could do a 3 day inpatient EEG series, but I doubt that would show anything, since his sleep studies were all negative - those run a limited EEG overnight. I think if he was having seizures, they would show up on the sleep studies, KWIM? I'll try to get hold of you via email (or else this comment will be too long)!

leah said...

I can't find your email from your profile - the only thing I can recommend is finding the underlying cause for the staring spells, which is very hard to do if they aren't caused by absence seizures. We suspect that Nolan's constant apnea leads to them - if your daughter has silent reflux or other issues of that nature, a sleep study might show issues with sleeping, which can lead to some pretty impressive zone-outs during the day. That is our running theory with Nolan, though it doesn't explain why the staring spells started and ended so abruptly.

Kyla said...

Agh!! Our specialists do not charge for records if they are requested by the office they are being sent to...but if I request a copy to mail yself or keep, then we have to pay. If Cleveland Clinic requested them directly, would the ENT do it for no charge?

leah said...

Possibly - but I'm just trying to get everything sent over ASAP to prevent any "issues" with the appointment in September. We only get one shot at this (insurance issues), so I just want the geneticist to have all the information at hand!