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What I really wanted was a photo of a pokemon on top of the CT machine, but they were't cooperating.

What I really wanted was a photo of a pokemon on top of the CT machine, but they weren’t cooperating.

It seems like one week I have too much to write about and the next week not enough.  I spend one week on the phone making appointments and the next week going to them.

This last week I spent a lot of time on the phone making one appointment.  Orion was due for a check-up with the neurosurgeon.  This is a complicated appointment because it requires us first to visit radiology for a CT scan and X-rays and then to review them, and whatever ongoing care plan, with the doctor.  And –  It’s neurosurgery.

It doesn’t really matter which days the doctor is scheduled to do surgery and which days he’s scheduled to be in the office.  When something comes up, it’s probably a priority.  Of course the hospital doesn’t have an Operating Room dedicated just to head trauma so schedules jiggle all over the place.

Thankfully, I don’t have to orchestrate the whole thing.  That’s the job of the doctor’s scheduling secretary.  I made the initial appointment by calling her and suggesting which days wouldn’t work for me.  Then she called me back and gave me a time, knowing she’d have to confirm it with radiology.  She said she’d call me back if there were any changes.

Three times this week she called me back.

I know people’s appointments have moved for us plenty of times in the last 28 years.  (Orion’s first neurosurgery was in December of 1988).  It’s nice to be the ones who are NOT in a hurry to see the doctor.  It’s been years since we’ve been in and these are people we’ve had a relationship with all of Orion’s life.

Everything is hunky-dory.  Orion is stable.  His scans look almost exactly the same as they did 3 years ago.  I don’t look the same of course.  The PA didn’t recognize me coming in with Orion until she turned face to face with me to explain the scan.  The weight loss really is that dramatic, and she’s never seen me at this weight (although the doctor has).  She’s going back to school for her doctorate this year.  We’re going to try and squeeze lunch into the scheduling drama the next time we come in.

Squeezing in lunch keeps me sane. Today it was a visit to YUM Kitchen and Bakery.

Squeezing in lunch keeps me sane. Today it was a visit to YUM Kitchen and Bakery.

I also asked the doctor the unspeakable question.  What are we going to do when he retires?  Thankfully he’s still healthy and able.  He’s not planning to retire any time soon.  He hopes to continue working well into his 70’s.  One of his regular consultants (an infectious disease specialist I have a respectfully contentious relationship with) intends to continue working into his 80’s.

That may seem odd, but for me it’s actually very reassuring.  It’s hard to find good doctors and we have been a team on Orion’s behalf for a very long time.  When you are doing something you love, something that’s challenging, it keeps you vital.  Over the years I’ve seen first hand how devoted this doctor is to his work and his patients.  Nice to know it hasn’t gotten old.

Definitely YUM!

Definitely YUM!






Ups and Downs

The saga of the house of sick continues replete with great drama.  There are also long periods of absolutely nothing getting done including posting a Monday blog.  Luckily there are occasional bright spots as well.

Kuan Yin from wickapedia

Kuan Yin from wickapedia

The second Thursday of the month is GOM (Goddess of the Month).  My women’s group has been getting together exploring myth and ritual for almost 15 years now.  We pick a theme at the beginning of the year, divide up the months and show up.  Whoever’s month it is is in charge and the rest of us are all in for whatever our hostess has in store.

We go back and forth with more or less structured themes.  Sometimes we’ll follow a book chapter by chapter.  Our founding was to take a year and go through Ladies of the Lake by Caitlin Matthews, exploring one Goddess at a time.  Hence the name of the group.  Other years are less structured and this year is a free for all.  We spent a day at the Minneapolis Institute of Arts and picked a piece that inspired us.

Our first ritual this year was inspired by a statue of Kuan Yin, bodhisattva of compassion.  What a lovely way to start the year.  What a really necessary reminder to get through the rest of my weekend!

GOM is usually a late night, because we’re women and we chat.  I was awakened at 5am the next morning with Orion hollering “Mom, I threw up all over myself.”  Poor dear was so miserable and achy.  Once I got him cleaned up he literally slept the entire day.  I had to wake him up for Tylenol and fluids.

This may not sound like such a difficult day, but my entire to-do list involved shopping.  I still need the groceries and cat food.  I did manage to swing past the post office when they were closed on Sunday and drop off mail, but haven’t hit the Goodwill or the library, also on my list.  Saturday Orion was better but still dragging and I certainly couldn’t take him out to get my ingredients to make something for Sunday.

Sunday Orion was feeling well enough to send with his father (they over did it).  I managed to find the stuff in the house to make baklava.  I was free to attend Pie Day.

Pie Day was apparently inspired by Dan Pierce at Single Dad Laughing.  I missed the post but my friend Michelle didn’t.  She encouraged us to bring any kind of desert. We’d all cheer up from the post holiday blues and end up in a sugar coma.  It was a sugar orgy!

Which brings us to Monday.  Monday morning Orion woke up with a headache.  Orion has hydrocephalus and has a shunt that drains excess spinal fluid from his brain into his abdominal cavity where it can be absorbed.  When it gets blocked, clogged, infected, pinched off or stops working Orion gets a headache.

Sometimes that can be fixed externally.  Often it involves brain surgery.  Orion is 24 years old and I stopped counting brain surgeries before he was 10.  He had 4 before he was six months old and although we’ve gone years without one we’ve also had years where he’s had 5 in 4 months.  An infection is even worse and he’s had those too.

When Orion is sick I watch him like a hawk and when Orion says he’s got a shunt headache I take him very seriously.  So after getting showered and dressed (pointedly in clothes that did not need to be removed for radiology) we were off to the ER.  You all know that every ER in the country is full to capacity with the flu right now and ours was no exception.  There wasn’t even a parking spot in the ER lot!

Where we wait.  Orion's usually happier in his chair than on the cot and just as easy to transport!

Where we wait. Orion’s usually happier in his chair than on the cot and just as easy to transport!

We know the drill.  First you talk to the triage nurse.  Then you talk to the intake nurse.  Then you talk to the nurse assigned to your case.  Somewhere in there you talk with registration and pull out the insurance cards.  Eventually you get to talk to the ER doc, or on Monday the physician’s assistant, who can actually order something to be done.  You tell them all that they need to call the neurosurgeon’s office and let them know we’re here.  (It is protocol to let them make that phone call although there have been occasions when I’ve just gone and made it myself.)

Then you wait.  You wait for someone to come and draw blood.  You wait to get in line at radiology where you will need both Xrays and a CT scan.  You hope that the radiology techs are willing and able to deal with Orion’s other structural anomalies (the one’s that make it hard for him to get into the “right” position for the pictures).  You wait for a radiologist to come by and actually READ the pictures.  You wait for the ER doctor to report what the radiologist report says.  Then you wait for neurosurgery, which has finally been called, to make their way down to the ER to decide what to do.

Monday everything actually looked pretty good.  The blood work was normal.  The radiology was close to Orion’s baseline.  The neurosurgeon tapped the shunt to make sure it was working and even that didn’t indicate any excess pressure.  The CSF (spinal fluid) looked clear and although they will culture it, that will take over a week.  The neurosurgeon suggested an eye exam and sent us home.

I suppose a headache from eye strain probably does feel a lot like the beginnings of a shunt headache.  I suspect Orion is still a little dehydrated from Friday which will also cause a nasty headache.  In 24 years Orion has never been wrong about calling a headache for what it is.  Maybe this time he just doesn’t feel well enough not to blow it?  I’m keeping him home again today, pushing fluids and keeping fingers crossed.

May Kuan Yin look down upon us in compassion.  May we call on her to help us maintain our patience and good temper throughout our trials.  May we rely on her mercy as we work our way through our own dharma.  May we be blessed by the compassionate Kuan Yin.

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