Home Base

We were back in my hometown of Novato, California, from May 9th to June 25th. This was the longest we have been in one place in the 10 months we have been traveling. Initially we came back to pick up Taryn from college, take her to a couple of doctor appointments and wait for Christina to graduate from UC Davis. Then we would be on our merry way for the summer.

But sometimes plans change and you go with the flow and you thank God that you have family there to help out.

Two years ago Taryn had a seizure, out of the blue, at the age of seventeen. At that moment her life changed and we went with the flow. While in the hospital trying to figure out why she had the seizure we also learned that she a condition called Chiari Malformation. We met with a neurologist, had some tests done and she was diagnosed with Epilepsy. They put her on anti seizure medication and she now been seizure-free for just over two years. YAY! Well, one of the appointments she had in early May was with a Neurosurgeon. Her neurologist wanted us to talk with him about Taryn’s Chiari Malformation just to be on the safe side. We went thinking it would be a quick “meet and greet” type appointment and he would say, “Hey, yes its sever but she is doing well, so let’s just keep on eye on things!” He took a look at her MRI, ask her a few questions about headaches and did some coordination tests with her.

Then he turned to us and said, “We really need to operate on this. It’s an easy fix. I can do the surgery in 90 minutes. And it’s too risky letting her walk around with this.”

My brain spun. My thoughts were, WAIT, WHAT? Did you just say that you want to do BRAIN SURGERY on MY daughter?

My mouth said, “Ummm, okay, when?”

Doctor C: “I can get her in on May 31st”

Me: “Wow, that’s only 3 weeks away! Shouldn’t you be so busy that we need to wait months? What about insurance? Will we have time to fight through denials from the insurance company and file repeals?”

Doctor C: “No, I have a really good insurance coordinator that knows all of the ins and outs and she will have everything in place in a couple of weeks.”

He told us a couple of stories of women that died in childbirth because they didn’t know they had condition and one young man that knew he had it, but fell off of his bike and landed on his head just right and it killed him. I’m sure he threw these in for good measure, just to make his point. That was enough to convince us to go ahead and set up the surgery. We still had time to cancel the surgery if we checked around and weren’t sure that we wanted to go this route.

We texted a friend whose daughter had the same surgery, by the same doctor. She told us that he was indeed the best doctor on the west coast and they really liked him and trusted him. So we went ahead and let the wheels begin turning. Those three weeks went quickly. We snuck in a week long trip to Bodega Bay to camp on the ocean, had a pre-op checkup with her GP and even had time to get her teeth cleaned by the dentist.

Things were falling into place so easily. It was actually a little alarming because…

  • Every six months we have to get new approvals for Taryn’s medications from the insurance company, we expected that something like brain surgery would take months to get approved! Nope. Not this time.
  • We needed a place to park out trailer near Sacramento, with full hook ups, so that we could be close by and still take care of the cat and dog. We are members of the group Escapees and they have a network of members that will let you park overnight. Most are just for one night and generally it’s in their driveway or on the street in front of their house. We found Lora, a widow, and she lived in Rio Linda, on five acres, with full hook-ups and she said we could stay the entire time Taryn was in the hospital! She even let the dog out to play and go potty a few times a day so that we didn’t have to come back during the day. She was such a gift to us!

The day of the surgery arrived. We got her ready, the doctor came in to wheel her away and said that he would be done in 1 hour and 20 minutes. I had no idea how hard it would be to see my little girl in a hospital bed, being wheeled into surgery. I felt like a horrible mom because I couldn’t even speak the words, “Good-bye, I love you, we will see you soon.”

Nearly to the minute the nurse called to tell us that Taryn was out of surgery and the doctor would be out to speak with us soon. He explained to us that everything went as planned and when he made the adjustments needed, he could see physically see the brain ‘relax’. AMAZING!

After the Chiari Malformation surgery.

Taryn did really well after the surgery. She was in pain (which was totally normal) and couldn’t eat because of nausea (also normal). ┬áBut she just wasn’t herself until the evening of the next day. But then she was back with a bang! Christy and Heba came to the hospital to visit with her, so Maury and I walked to a restaurant to meet some dear friends for dinner. When we returned to the hospital, there was Taryn, sitting up in bed, happy and laughing with the girls!

We thought that she would need to be on bed-rest for a couple of weeks, but the doctor said, “No way! Get out and walk every day, just don’t lift more than 5 pounds until your follow up visit.

We took her back to Novato and simply waited until the follow up appointment. No complications, no problems. My parents were amazing! They fed us and let us park our trailer in their driveway for nearly 7 weeks. My mom let me bring my dog into the house on even watched the dog a couple of times. Now that right there is love! My mom is not a huge fan of animals.

Now it is nearly August and we have dragged Taryn all over the PNW. Currently we are near Glacier National Park in Montana and too soon we will be taking her back to college near Sacramento, CA. She has been a real trooper, living with us in this tiny little trailer and sleeping on a bed that makes into a table.

Beautiful British Columbia has been her favorite place so far. The weather was nice and cool and that is just the way she likes it.

Taryn doing all of the work.

 

 

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