A lot has happened that last several months. Back in July, Jake had his usual MRI scans to monitor tumors from his Neurofibromatosis condition. He went 2 plus years between scans--that's just where our healthcare system is currently. He got 5 MRIs in total and we live by the most expensive hospital in Colorado. So skipping a year is more financially doable to us sadly.
Well we went years with great checkups, but this one set us back again. It was bound to happen...that's just part of NF. We found a tumor on his C8 nerve had almost doubled in size. That nerve controls your hand/arm strength. The doctor did a strength test and decided it was time to take care of it. However--living in a small valley also has it's disadvantages. The neurosurgeon was not eager and very willing to take care of this particular case due to the location of the tumor and lack of resources in our smaller hospital.
That put an immense amount of pressure on us...and with the end of year approaching quickly and an out of pocket maxed out, we desperately had to find answers fast. I'm not implying that the surgery had to be immediately, but financially it really needed to take place in 2016. Jake's old surgeon from KUMed left before we moved to Colorado. That was a big reason in us deciding to move here...had no neurosurgeon to be attached to in Kansas. We just didn't see being in this situation and not having the same resources out here.
Luckily, my sister in law's dad works at KUMed and has connections. He sent an inquiry to the head of neurosurgery and Dr. Camarata was more than willing to see Jake. An 11-12 hour trip back wasn't exactly ideal, but after checking out the online resume of Dr. C we felt very comfortable giving him a shot. So late September Jake and I drove to KC to meet him and his take on the surgery was very different from what our local neurosurgeon had said. The local guy thought the surgery was going to require a fused neck. Jake was the most freaked out about this scenario. Dr. C considered himself "old school" and doesn't believe in fusing until your body asks for it. So he suggested removing a part of the vertebrae and only going back in if down the road his neck needed the fusing. He believed Jake's body should be able to compensate for a partially missing vertebrae. That was a relief, and the doctor quoted a 2-3 hour surgery, followed by 2-3 days in the hospital. After Jake's history, this seemed to be a cakewalk in comparison.
We scheduled the surgery for November 3rd. Jake's PTO/sick time and FMLA was never an issue. He's got so much saved up that we knew he was going to be fine. I was a nervous wreck as an hourly employee, it seems as though I used my PTO as quickly as I accrue it. Luckily, my boss has been more than accommodating and has worked with me.
We drove to KC on Halloween, we stayed with Steve and Mindy Owens (my sister in law's parents, Steve is a Cardiologist at KUMed and had the connections)... they took such good care of us! They even gave us their tickets to KUs first exhibition game vs Washburn. We had a little fun around the pre surgery stuff... I was excited to see the new wing dedicated to the original rules of basketball. I tried not to photograph everything, but I pretty much did!
Thursday morning we were up and out the door at 530 am.
Got checked in and things couldn't have gone any better than they did.
I was super worried about the amount of pain Jake was in right after surgery. We had to witness him move from the recovery bed and get to his room bed. It was an entirely different story when they finally got him pain meds and muscle relaxers. Still a lot of pain, but he was more mobile and quickly started moving and getting around.
He was released Saturday afternoon... just over 2 days from when we checked in.
Sunday, I got him out to walk a park and he was having such a great day, we decided to drive home.
It would give us more time to relax at home and we did not want to overstay our welcome. Amazingly, we made it in one day. Reece wasn't thrilled we were home... Jake's dad stayed here and they must have had so much fun without us.
Jake is more stir crazy today--we are nearly 4 weeks out and he hasn't been released to drive yet. I'm back at work, but Jake is really fully capable of taking care of himself. He believes he will head back to work the first full week of December, it will most likely just be part time, as it's a lot of strain and he has a lot of stamina to build back up. Overall, I just could not be happier with how everything has turned out. He's a trooper and nothing will keep him down. He even opted to have 3 tumors removed from his leg since he maxed out. It was very minor-he literally walked out from that surgery within an hour.
That's the most current NF chapter!!
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| Jake napped a lot... so Nora Rainbow kept me lots of company. |
