This is it! The week we've been waiting for! Theo's VNS surgery is finally here!
Monday, May 1st:
When Theo's bus driver and aid arrived in the morning they were asking me about one of our trees. They both love it and while I think it's pretty, it is currently making my eyes itch! His bus driver asked if she could come back sometime and clip one of the small branches so she could take it to a nursery to identify. I asked our neighborhood facebook group and it turns out they are chokecherry trees. Who knew?!
While Theo was at school Josh and I packed our four bags (Theo's medical equipment, my stuff, Josh's stuff, and Theo's stuff). The VNS is supposed to be an outpatient procedure, but we are always prepared to stay the night.
After Theo got home I received a call from the hospital. Surgery was scheduled for 10:45 AM, so check in time was 8:45 AM. So we are going to be driving into downtown Chicago at rush hour. Sounds fun!
Theo had five observable seizures today.
The next morning (Tuesday, May 2nd) we got up at our usual 5:30 AM and started getting ready. I watched GoogleMaps, but the traffic kept getting worse, so we headed out at 6:45 AM. It's always best to be early!
Traffic was a mess and there were a few accidents, but we managed to get to the hospital at 8:20 AM.
They showed us to our room and got Theo all ready for surgery.
We spoke to a few different nurses, Dr Lam (Neurosurgeon), and the Anesthesiologist. Everyone was good to go, so they rolled Theo to the OR at 11:00 AM.
We were told the surgery could take 2.5 hours, so Josh and I headed down the street and grabbed some brunch at Wildberry Cafe. After eating our omelettes and pancakes we headed down the Mag Mile to the Water Tower Mall to get some Garretts Popcorn.
[The Mag Mile is lined with tulips!]
At 12:30 PM we got a text saying that Theo's surgery was wrapping up (that was fast), so we headed back to the hospital.
[Doesn't look like a hospital, does it?]
We got back to Theo's room and waited to see the doctor. Two of Dr Lam's nurses, Daisy and Megan, came in to see us. I have been coordinating Theo's surgery stuff with them for the last few months and it was nice to finally meet them in person. Then Dr. Lam came in and told us that Theo did great and we would be able to see him soon.
At 2:30 PM we were finally allowed to go to recovery.
Theo was just waking up, but kept his eyes closed until he heard Josh's voice.
We gave Theo some juice and he held that down, so they moved us back to his pre-op room. The nurse told us that as long as Theo tolerates his formula then we can leave. We gave him food and meds and then the nurse gave him some Tylenol, took out his IV, and officially discharged us. It was BY FAR the easiest discharge we have ever had!
We got our van, swung by the Nutella Cafe, and then headed home. Theo did great on the drive and slept most of the way.
That night we watched the Lakers beat GS in a nail-bitter!
Wednesday, May 3rd:
Theo had a great night and didn't appear to be in very much pain. We gave him Tylenol a couple times during the day and he took a few naps.
Happy Star Wars Day!
I went on Shop Disney to see how much the new Cal Kestis lightsaber would be and I got put in a waiting room. There were 17,000+ guest ahead of me. I got into the system in under four minutes and all of the lightsabers were sold out! $400 a piece and they were sold out and already on eBay. So dumb.
Carrie Fisher finally got her Star on Star Wars day! How amazing is that?!
Just so you know:
Ms. Jess came to visit today for a few minutes and that night I went and saw Guardians of the Galaxy 3. It was really good!
On Friday, May 5th, the WHO declared the COVID-19 Pandemic Emergency was over. That doesn't mean the virus is gone - we still need to be careful.
Theo started coughing today so we started him on The Vest again. We had paused it after surgery, but continued with his nebulizer and cough assists twice a day. We put The Vest on a low setting to make sure it wasn't hurting Theo and once we were sure it was fine we turned it up to full power. We are NOT going back to the hospital for pneumonia, so we did respiratory therapy every four hours.
["The Vest," The on a wedge, suction machine, nebulizer, cough assist, and Beat-Bo]
The Lakers lost game 2 on Thursday, but they destroyed GS on Saturday night!
Sunday, May 7th: Triathlon Day!
The day was finally here! I've been training for 12 weeks (minus the three weeks that Theo was in the hospital) for this and I was ready!
I got up at 5:00 AM and headed to the local gym for my 1.2 mile swim. All seven lanes of the pool were open from 6:00 AM to 7:00 AM, but then life guard training was starting at 7:00 AM and only one lane would be available. I knew I needed to finish in an hour and I did! I finished the 1.2 miles in 52 minutes! I did get a little acid reflux when I was about halfway done and I had to stop and cough a few times, but I was good with my time.
I then headed home where I changed and Josh helped me pack the van. Ms. Jess arrived and Josh and I headed to the Aux Sable park where Josh would hang out with the van while I did my 56 mile bike ride.
I headed out and 10 miles into my ride a felt a clunk. The clunk continued to happen whenever I pushed down on my right pedal. Ugh! I don't have time for this! I adjusted my gears and figured out that if I keep my bike in the highest gear (highest resistance) then it wouldn't clunk.
My feet were numb from pushing down so hard, my hands were rubbing raw from holding my handlebars too tightly, my knees were hurting from climbing up hills in a high gear, and my neck and upper back were throbbing. I rode the next 36 miles in the highest gear until my bike finally gave out.
I called Josh and he came and got me. I was so upset that I didn't finish, but it's hard on a broken bike.
We drove home, I changed my clothes and checked on Theo and Jess, while Josh packed the van. We then dropped off the Jeep in Morris, dropped a cooler at the half way mark, and headed to the starting line in Channahon.
Even before I started running I was sweating! Like dripping off my body kinda sweat! It was 92 degrees with no breeze and the trail is between two bodies of water, so the humidity level was unbearable.
Josh rode my hybrid bike on the trail while I ran/jogged/walked behind him. I drank a ton of water and consumed my gel packs, but I was still struggling. Just a few miles in I started to shake and then I got the chills. I've worked outside enough to know the signs of heat exhaustion. I told Josh that I was calling it. He rode his bike back to the van (since I was less than half way done) and then came to pick me up at the next trailhead. I ended up only running four miles, which is not even 1/3 of my goal. I was mad, but I also knew that if I continued I would have just made myself sick.
Ugh! I hate quitting and I hate failing (who does?). Luckily, I have some amazing friends and family member who reminded me that my bucket list specifies that I need to "Do a triathlon" which I technically did. So, I'm not a failure. I accomplished my bucket list goal, I just fell short of my mileage goal.
Lacey, Emily, and Katey made me these shirts and got me a medal! I love them so much especially the corn fields! I laughed and then I cried and then I laughed some more! My friends have such faith in me and I love that! Thank you ladies for your love and support!
[I'll have to get the mileage adjusted 🙂]
I should have cut back on my mileage goal a bit. I tried for a 70.3 triathlon and that's what I trained for, but when I lost those three week I should have cut it back to an Olympic distance. If I only had a 25 mile bike ride I could have started the run earlier than 1:30 PM and actually finished the 6.2 miles. I also didn't train for the weather conditions. How could I? I ran and biked outside when I could, but it was rainy and in the 50s leading up to May 7th.
Josh picked me up and then we headed to pick up the cooler and his Jeep. We stopped and got a sandwich in Morris (I was starving) before heading home.
And look who was waiting for me when I got home:
I just love him so much! Thanks so much to Ms Jess for watching Theo all day, doing his therapies, playing, giving him his meds, and keeping him happy! And I want to thank Josh for putting up with me during my long (5+ hour) training sessions over the last 12 weeks. AND for being my porter. Josh got my water, calorie drinks, and equipment ready AND he rode a bike in 92 degree weather carrying water for me. That's one good porter!
It can take 2-4 weeks to fully recover from a 70.3 triathlon, so I am going to take a week or so off to rest and recover.
Wanna see something amazing?!
This little girl has the same brain aneurysm that Theo has. The surgery in utero was successful! Hopefully more and more VOGM warriors will survive this devastating diagnosis in the future!
https://www.cnn.com/2023/05/04/health/brain-surgery-in-utero
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