Friday, July 2, 2010

Another wild goose chase

Well, I left the house this morning expecting to take Jaymes to see the neurologist at Duke. The morning started out in the typical muddled chaos that is my house. Woke up excruciatingly early, stumbled to my laptop and attempted multiple times to type in my password. For some reason the number eight looked a lot like the number nine, so it took an excessive number of tries. Checked my email, got the address for Duke. Thought about writing down the address, but it was easy enough to remember so I decided getting a pen would just be an unnecessary waste of what little energy I had. Wandered out to the pasture in a daze, at one point wondering what the neighbors would think of me in my pajamas in a zombie-like state, hobbling barefoot through the grass. Fed the pony, who was actually laid out on the ground. He was quite surprised to see me so early, lately it's been after ten when I emerge with breakfast. I threw some hay and his grain at him and ran back in to get dressed and ready. Jaymes woke up easily, as always. Sierra needed some prodding. Got both kids dressed and ready, and myself halfway presentable. Kids are strapped into their car seats with large baggies of Lucky Charms and squirty bottles of water. Get in the car, turn the key, and realize that i don't know where my ID or my debit card are. There's only half a tank gas- not enough to get very far. Ran into the house, interrogated Jason about it (he was innocent, by the way), frantically tore through the entire house in search of the elusive cards. I had finally found both cards the day before, having misplaced them for nearly a week. Finally, I gave up, and took Jason's debit card. Hopped back into car, and realize that ID and debit cards are in the little storage drawer- right where I put them yesterday, along with parking garage money. I had put them there so I'd be all ready to go. So much for that plan. Finally got out, and rushed off to get gas then drive like crazy the entire way there. I still ended up being nearly an hour late.

Upon arriving in the general area of Duke hospital, my trusty GPS leads me out of said hospital area and into a wooded area that looked nothing at all like a hospital area. It was at this point it dawned on me that I had transposed numbers. Should have written down the address. Was is 2301? 3201? 2103? 2031? No clue. Turned off the GPS and went by the hospital signs alone. Turned into the enormous parking lot and got the worst spot in the entire place. Took a good five minutes of walking with two very sleepy children until I found the correct elevator. At this point in my journey, I found myself staring at the elevator buttons, wondering which one would magically transport me across the very scary road that separated the three of us from the Children's Hospital. On the advice of some stranger, I hit the TR button. I have no idea what TR stands for, but apparently it leads to this horrible little tunnel that runs under the road to the hospital.

It was a bright, white, neat looking hallway but WAY too hot and a little too confining for my comfort. Also, it was pretty much uphill the entire way. I imagine the exercise is good for me though. We got to the correct building, and I was informed that we were an hour late, to which I replied that I had originally been told 9:30, then the automated phone call told me 8:30. And of course lately I am incapable of getting anywhere on time... Luckily for me, they were very understanding. We had no wait at all to see the doctor, who listened to me and took things very seriously.

The only problem was, the pediatrician's office referred us to the wrong physician. They were supposed to have referred us to the neurologist. Instead, they referred us to the autism clinic. Now, while they do use the neurology department's exam rooms on certain days, they are certainly not neurology. They manage medications. Which I'm sure they're great at- but we have Dr. Klinepeter to manage Jaymes' meds, and he's second to none.

So, the doctor called up the neurologist and set us up an appointment for July 27th and sent us on our merry way. We left the exam room a shambles- the doctor let Jaymes play with the roll of paper they use to cover exam tables. Not a good idea. I cleaned up as much as I could, but little shreds were kind of everywhere.

Anyway, we went down to the first floor, where I tried to let the kids play in the main waiting area. Unfortunately, Jaymes wanted to play in a section he was not supposed to be. So I had to race to capture him, and drag him back out. Gave up, and went outside and sat both kids on a bench. Decided that July 27th was too long, based on the symptoms Jaymes is having. Called the neuro office, and begged and pleaded and came away with a 10:20 appointment on July 13. Still not ideal, but good!

Sierra wanted very badly to see the fish in the elevator (the elevator is one of the clear glass kind, and it actually comes through a huge fish tank- really cool), so we did that quickly, then came out and made the long trek back to our car. Upon arriving at the car, I noticed a horrific stench coming from Jaymes, and executed a clumsy and unpleasant driver's seat diaper change. That finished, I pulled out and drove the 2 hours back home.

When we got back home, I was dead tired, so I flopped on the couch like a wet noodle. Jason was home still, and he fed them lunch. I stayed flopped on the couch until I heard the sounds of destruction coming from Sierra's room. Dragged Jaymes out of her room and put both kids on the couches for naps. Neither kid actually took naps. Oh well.

A couple hours later, Jason got home from work again, and we headed to Winston for the ENT appointment. The doctor listened to the issues, and of course the first thing he had to say was "have you taken him to a neurologist?"

Well no. If only it were so easy.

Anyway, Jaymes' one ear is no longer infected, but the tube is gone and there is lots of fluid in there. The verdict: set number SIX of ear tubes. That should be sometime in September, unless there is a cancellation. They will also check his nose thoroughly while he is under, and if necessary cauterize some of the blood vessels in the nose to prevent future nose bleeds. He did not see anything today that indicated a physical issue causing the nose bleeds and agreed that it all sounded very neurological.

So... I am dead tired. I am so frustrated. I'm a little bit cranky. But we're getting somewhere. I have the autism clinic doc at duke on my side, as well as Dr. Klinepeter's office. We've got the brain MRI scheduled for Wednesday. The neuro appointment on the 13th.

My sanity is kind of hanging in the air right now. Too much happening all at once, and I'm so tired. My arms are all scratched and bruised from Jaymes biting and clawing at me with his nails. I would like to ask that nothing else be dumped on me for a couple weeks.

Oh, and did I mention that yesterday Jaymes OT told me she's discharging him on the 14th? Great. So, the search is on now, for a new OT who can actually take him at a semi convenient time within the next few weeks. Would have been great to have a bit more notice than this. To her credit, she did tell me we'd only do another six months. I just didn't think about it I guess. Would still have been nice to get a reminder a few weeks ago rather than a week or two before though.

I am going riding tomorrow with my friend Dianne. We will ride our horses, and joke, and laugh like lunatics and I will temporarily forget the shitstorm going on right now. And it will be excellent.


leah said...

Ugh- what a day! I've had referrals to the wrong doc happen more than once. It is so exhausting to get kids to a Dr. office, then find out it is set up for the wrong doc!

Here's to the neurologist being helpful- our favorite doc so far is our neurologist for Nolan's central apnea. She's been truly caring and wonderful (even called us at home to reassure us he wouldn't die in his sleep- which was very caring of her).

Here's to getting this all sorted out soon!

Melanie said...

Ugh!! What a pain in the rear. Btw, if the state of NC poops out on you, Dr. Joanne Janas of Child Neurology of Atlanta was fantastic for us, took me very seriously, etc. Good luck, hope you get answers soon!