Friday, August 5, 2011

Getting Things Ready for Cleveland Clinic

Our pediatrician has faxed off the necessary medical records to Cleveland Clinic - it is a great relief to have this done. I picked up my copy of the faxed documents, and realized several records were missing. They sent:

A letter from his GI noting adequate control of the reflux (this was sent a year ago).
A letter from his ENT showing poor control of his reflux, and showing the diagnosis of laryngomalacia.
One audiogram.
A report from Nolan's posterior urethral valve surgery.
One sleep study report.
His normal EEG findings from the staring spells a long time ago.

They are missing all the labwork (showing the slightly elevated AST levels), his endoscopy biopsy results (showing ectopic gastric mucosa and flattened villi), his MRI's and CT scans, all ophthamology reports, and all of his pH probe results. Not to mention the four sets of tubes from chronic middle ear infections, the history of being failure-to-thrive (especially since he is dropping on the charts again), and the surgical failures to control apnea (tonsillectomy and supraglottoplasty). And then there is the mixed hearing loss which is slowly progressing over time.

I made a few phone calls to specialists this morning: I called the GI to get his biopsy record, lab work results, and pH probe results faxed over. I called the ENT and the audiologist to have the same thing done. I still need to call the ophthalmologist.

I have several release forms to fill out and send back to the specialists - it takes quite a lot of work to get everything organized. I wouldn't be so worried about the whole thing, but our insurance company has approved only ONE visit with the geneticist, and won't cover any lab work or follow-up visits. Because of this, we need to have all the ducks in a row. We only get one shot at this - we need to make it count.

Hopefully all of the records will be into the Cleveland Clinic in short order.


Herding Grasshoppers said...


You are AMAZING! You are really on top of things! Praying all the records arrive as needed :D


TheSweetOne said...

That must be so frustrating! Thankfully we have a great relationship with our pediatrician's receptionist who gives me all the copies I need. Our endo was nice enough to give me a copy of our latest cardiology report (I know. crazy but the cardiologist doesn't, by policy, send the the reports to the parents...). When Lauren had surgery, the hospital was nice enough to let me have a copy of that report too. It's a LOT! We're up to two binders of reports and files.... Hopefully you'll get everything you need in time!

Julia said...

What a hassle. I hope everything gets squared away before you go there. Maybe you should have a sidebar on your blog like Jess has for Connor, titled "Nolan has what?" with a list of all his diagnoses. Good luck with everything.

leah said...

Julia, I do have a list on the right hand side - it is lower down on the page, though!

I think Nolan's medical record is so big that the pediatrician didn't want to send it all in (overwhelmingly big). Of course, this is exactly why we're seeing a geneticist: and the geneticist should get a gander at most of the records! Our audiologist is sending off the records today - the rest will get sent once I send in the release forms to the specialists.

rouchi said...

I wonder how with so much in hand, you manage to keep sane and put down all details on the blog.Wonderful job really and really hope all goes well.....papers and all!

leah said...

The blog is my way of keeping track of everything - without it, I would have forgotten about a few "weird" things that have popped up in Nolan's labs, etc.

Hopefully all of the paperwork will get to the geneticist and she can review them BEFORE our visit. That almost never happens, though...