Saturday, September 20, 2008


I worked hard on Wednesday trying to find a doctor at Jefferson (big university hospital in Philly that has a great reputation for neurology). I put the word out that we needed anyone who knew anyone who might be able to help, and the outpouring of support and offers of help was amazing. Ultimately I got his hospital doctor (HMS doctor) to contact a particular doctor at Jeff and the transfer took place on Thursday night. They work through the night there, and doctors were in to see him that night and around six Friday morning. They took him for a few tests that night and even drew some blood for another test at one in the morning.

Ultimately they agreed with what the doctors at Bryn Mawr said: since nothing at all is showing up on any of the tests, they are calling it Functional Neurological Disorder, which basically means that it is medically unexplained. All tests continue to be clean and physically he has improved so much that had we not been transferred from another acute facility, the doctors probably would have looked at us like we were crazy.

Early yesterday evening they sent him home. We won't mention how I brought his clothes that he wore to the hospital home when we were cleaning out his first hospital room, so I had to go to the gift shop and buy him a shirt so he wouldn't look like an escaped mental patient, though he did still have to were their pajama pants and special socks home. We also won't mention how the sleep deprivation caught up with me so much on the ride home that I had to keep begging DH to talk with me so I could stay awake. Or how I fell asleep around 6 o'clock and pretty much slept through until around 5:30 this morning when my sister called to tell me that J's coughing has been pretty bad and she's not sure what more to do. I drove out, picked her up, brought her home, did a neb treatment for her, then let her sleep in bed with Mommy and Daddy. At least she slept in with us!

I took her to the doctor this morning who basically, after listening to how the last seven days had gone, prescribed time together as a whole family.

Time together as a family, hmmm? I know my new found medical degree is only from Google, but I agree with his prescription.

Sorry for the cliched quote, but . . . "there's no place like home."


Perky said...

I'm SOOOOO glad you're all home! Please let me know what else I can do to help. Remember - you can still ask for help if you need it!!!

Kristine Adams said...

Well, at least there is a consensus of what to call his condition. Defintely take some time over the next few days and just enjoy each other! I will keep praying for all of you.

Trace said...

My neurologist is at Jeff (I have one that specializes in MS or I would have passed him name on). Is there any treatment/Meds? Or is it reactionary...they treat when there's a relapse.

Kelly said...

glad that things are calming down. i know its a super long shot, but have the done an MRI of the spine? There something called Devic's Disease. It's rare, but it symptoms mimic MS. Here's a basic link about it:
I just thought i'd pass this along.