Theo's Angiogram, Halloween, Cornbread, and Chili

On Monday, October 26th, Josh, Theo, and I headed to the OSF St Francis Children's Hospital for Theo's yearly angiogram with IR.

The goal of the angiogram was to check on the blood flow in Theo's brain, his embolized Vein of Galen aneurysm, and the fistula (which was found during his angiogram last year). 

We arrived at the hospital at 9:00 AM for Theo's check in. We were initially told to go to Level G where the kids are usually sent for pre-op, but I knew this was wrong. We always go to Level 2 to see IR. BUT I didn't want to correct the hospital worker, so we headed downstairs to G and then were sent upstairs to Level 2. It's crazy how well I know the workings of this hospital. This is clearly not our first time. 

We then spent the next two hours in pre-op. During this time we met with a bunch of nurses, Dr. Fraser, Dr. Russel, APN Mark, and the anesthesiologist. We have not seen Mark or Dr. Russel since Theo's last embolization TWO years ago! It was great to catch up with them and they both commented on how good Theo looks. Well, yeah, last time they saw Theo he looked like a freakin skeleton!

[Look how long those legs are!]

[Theo LOVES to lay on his iPad]

At 11:00 AM the nurses took Theo away for his angiogram. We gave kisses, waved goodbye, and headed to the cafeteria to get some lunch.

[This hospital has the BEST food! Here is the reason why I gain weight every time I go to the hospital!]

After about an hour I got a call from the nurse telling us that Dr. Fraser was done and that he would meet us in the conference room to tell us what they found.

Dr. Fraser started by telling us that Theo did great and he is one his way to recovery. Of course, we weren't worried about that part. He then told us that there was good news and bad new. Bad news is that the fistula is still present (sometimes they go away on their own), but the good news is that is hasn't gotten any bigger. The concern is that the fistula is located between Theo's brainstem and the embolized Vein of Galen aneurysm. He is concerned that it may grow and interfere with his brainstem or the aneurysm. Dr. Fraser told us that he would be meeting with the other vascular doctors (the "brain trust") on Wednesday and they would come up with a plan. He said they could use gamma knife radiation or go in manually and perform a craniotomy and clamp off the fistula.

He also told us that one of the large veins in Theo's leg had closed off. This is likely due to all the scar tissue from using it as an access point so many times. He said that the body compensated for that and made a new vein to bypass the closed off one. He was very impress with how fast Theo's body adapted.

After meeting with Dr. Fraser I was told to head down to recovery. I brought Theo's Paci, his iPad, and his tube (for venting). I could hear Theo crying before the doors even opened. He was really having a hard time because he wasn't allowed to roll over. They had to strap his legs down and he was NOT having it! They were also having a hard time keeping his oxygen levels high, but Theo didn't like the mask on his face. Poor kid, he was so confused. 

[Paci in his mouth and iPad on his chest]

He cried for about two hours before they moved us to Level 2 for the rest of his recovery. Josh was able to join us there, which was a life saver! The last four hours of recovery were long, but we had YouTube with unlimited Elmo, Poppy, and Baby Shark!

[Dad of the year, right?!]

We were discharged from the hospital around 6:00 PM and made the long drive home. It was a long day, but I'm glad Josh got to come with us this time.

This week my family participated in Walk Your Way to help raise awareness for VOGM. I also had other family members and friends reach out to let me know they would also be running for Theo. Thank you so much to everyone who participated! I truly appreciate it!

[Luke, Porter, Andie, and Kenna]

[Mom and Dad]

[Missy, Tyson, Brady, Cole, and Dane]

I'm happy to report that the first annual Walk Your Way for VOGM was a huge success! They raised over $20,000 (the goal was $10,000) AND they had over 1200 people participate! YAY! Thanks fo everyone who participated!

On October 27th, the Dodgers won the World Series! This has been a great year for the LA Teams! Do you think the Rams or Chargers will win the Super Bowl too?!

[Theo working with Becca for PT]

On Wednesday, October 28th, the vascular doctors met and decided what they were going to do with Theo. After the meeting I got a call from the IR APN, Jessica. She told me that Dr. Klopfenstein, the Cerebrovascular Neurosurgeon, will be preforming a craniotomy on Theo. She said that they will likely go in through one of his ventricles and will clamp off the fistula.  

Later that day Theo and I headed to Ottawa to meet with his neurosurgeon, Dr. Lin, for a previously scheduled six month check up. We talked about the upcoming surgery and he told me Theo was in good hands with Dr. Klopfenstein.

[Dr Lin's office has a nice view]

That night I got a call from Dr. Klopfenstein's office. We will be heading to Peoria on Wednesday (November 4th) to meet with him. Hopefully he'll present us with a brilliant plan and we can get Theo's surgery scheduled. I'll keep you all updated on the rest of his appointments and when his surgery will be. 

[Such a good colorer!]

I bought a lot of Halloween candy earlier in the month. I gave it all to Josh and told him to hide it. He did a pretty good job, but the day before Halloween I found the stash! 

Also on the day before Halloween the second season of The Mandalorian premiered! It was awesome!

Happy Halloween! 

We decided to stay at home and pass out candy.

[Think we have enough?!]

I set up a table outside our front door, left our door open, and kept the storm door closed. That way I could see and talk to the trick-or-treaters while still being COVID safe!

[Here they come!]

Overall it was a great night! Trick-or-treating was from 3-6 PM in our neighborhood. There were a TON of kids and we were able to get rid of most of the candy. What we didn't give away I made Josh take with him to work. I didn't even want it in my house. Too much of a temptation!

[We got a new mat! I think Theo likes it!]

On November 1st, I took down our Halloween decorations and put up our Christmas decorations! 

[Theo has been playing more and more with his dry food]

I told Josh I was craving some cold weather comfort food: chili and cornbread. Josh went out and bought a cast iron set and found recipes for the chili and cornbread. And for date night he made us some homemade comfort food! Isn't he the best?!

Josh has wanted a cast iron set for as long as I've know him! Look how happy he is!

The chili and the cornbread tasted fine, but we have time to improve on the recipes. If anyone has one they want to share please send it our way! No beans in the chili though! Thanks!

The best part of the cornbread was the crust. The cast iron was definitely worth it!