Theo at School, Visit with the Cerebrovascular Neurosurgeon, and Costco for Charity

This week Theo went to school and worked hard with his PT and OT. They got him up in the stander and they said he did really well. It helps that they have a "mini-BeeBo" there to help keep Theo motivated! 

On Tuesday, November 3rd, we went to see Ms. Laura (OT) at Thrive. I can't go into the sessions due to COVID-19, but she's really good at sending me photos and giving me a blow-by-blow update after the session. 

[Food play at home]

[I voted early. Did you vote? I REALLY hope you did.]

On Wednesday, November 4th, Josh, Theo, and I headed down to Peoria to meet with the Cerebrovascular Neurosurgeon, Dr. Klopfenstein. He has been on our team for a while now, but we've never met him in person. He is extremely nice and very straight forward. Dr K showed us images of Theo's brain and we got to see the infamous fistula. He believes that the fistula is causing venous hypertension, which can keep the cortex from developing. Also, if the fistula grows and ruptures (hemorrhages) it will cause a stroke and death. The doctor informed us that those are also the risk of surgery. BUT he believes that getting rid of the fistula is the right thing to do. 

He believes he can access the fistula by performing a craniotomy and going in through Theo's large ventricles. The fistula extends between the falx cerebri and the brainstem. From what I understand, the doctor will see it first by the flax cerebri and they will cauterize it and follow it down towards the brainstem. At any time if they thing they aren't able to safely cauterize it they will pull out. He said that if they aren't able to "get it" then they can create a pathway so that IR can go in through the veins and finish the job.

The surgery is scheduled for November 27th and it's going to be a long day. The plain is to put Theo under anesthesia and take him for an MRI first. After getting the imaging they will take him to the OR for the craniotomy. Dr K said that surgery should last about five hours. After Dr K is done, Dr. Fraser and the IR team will step in to perform an angiogram. They will be able to get a good look at the fistula and veins in Theo's brain. After the angio they will send Theo to recovery in the PICU where he will be for about 5-7 days. Recovery is going to be hard. The surgeon will need to cut a large incision in Theo's skull to access his brain. They will staple him up after the surgery and we will have to keep Theo elevated until they remove the staples (two weeks after he is released from the hospital).

There is also a concern with Theo's shunt. Dr. K said that since they are going in through the ventricles it can cause them to get all "gunky" which could cause his current shunt to clog. If that happens Dr. Lin will have to re-shunt him. There is a chance that the neurosurgeons will leave an EVD in after surgery to help drain any excess CSF just in case the shunt does get clogged. 

[Theo's EVD from his hospital stay in 2018]

There's also a chance that blood can get into his ventricles and CSF again. Last time this happened it caused Theo to be in a lot of pain. There is nothing you can do about it either. You just have to let the body flush out the blood. 

Guys, this is not going to be easy.

After talking to the doctor and giving him the go-ahead for surgery, a nurse came in to talk to us. We talked about post-op care and what happens when they take the staples out. We decided that it may be best to have Theo sedated while they remove the staples. Poor kid. 

After we got home from our doctors visit, Theo watched some videos from school and did some activities on his iPad.

Remember remember the 5th of November...

Look what finally came! I ordered him WAY back in February! I LOVE HIM!

[YES!]

[Dad helping Theo with his homework]

[Cuddles with his two best friends and his iPad]

On November 6th, Josh, Theo, and I ventured out. I don't think I've taken Theo anywhere that wasn't school, doctor, or therapy related since March. But we needed to get out of the house, so we went to Costco! I pushed Theo around in his stroller (shade was down and wind/rain guard was on) and Josh followed with a flatbed cart. We picked up a bunch of things for a local charity. We had a long list and the flatbed cart was pretty full, but there are people in my community that are in need and we are happy to help.

😭😭😂😂

FINALLY! IT'S OVER! On November 7th, Joe Biden became the President-elect of the United States of America.

Josh has a pretty cool job:

[Theo LOVES to stomp his feet and he loves his dad!]

[Baby Yoda sheets I bought for Theo. Aren't they the cutest?!]

[Seriously guys, Theo will eat his Paci's, but not real food?!]