Monday, November 16, 2020

Remembrance Day/Veterans Day and my LEEP

I am well aware that the majority of my blog is focused on Theo (for obvious reasons), but this week it is going to be more focused on me. Does that make me selfish? Probably. If you don't want to see some blood or learn details about my surgery on my lady parts, please skip to the next post.

I had an abnormal Pap smear a year ago, so I went back to the OBGYN to get a colposcopy. During this exam they took a biopsy of my cervix. The results from the biopsy showed I have "dysplasia of cervix, low grade" and "atypical squamous cells" on my cervix. My doctor informed me that sometimes these cells go away on their own, but rarely they can cause other issues. We decided to wait a year and see what my next pap shows. 

Fast forward to now. I went back in for my yearly pap and the results were the same: abnormal. I talked to my doctor again and we decided that I should get a LEEP. He told me that once they remove the "bad cells" I won't have abnormal paps, so I won't have to get any more colposcopy's in the future. Sign me up! Colposcopy's are NOT fun!

We scheduled my LEEP for November 13th and they told me I would have to get a COVID test before my surgery. UGH.

On November 10th, I headed to the hospital in Ottawa for my COVID test. I told the nurse that I had the flu test (nasopharyngeal swab) before and she said it was similar, but will "burn more" and cause my eyes to water. I can handle that! OH BOY! She didn't lie! Have you ever gone to the ocean beach and gotten taken out by a huge wave? And you get salt water up your nose? You know how that stings? YEP! That's what it felt like! It's not as bad as people say, but it's not enjoyable by any means. 

[Nice bloody nose after the COVID test]

I bought Theo three on these rompers from Tinker Tyke Threads. They are one piece, have a access port for his G-tube, a hood, a zipper for diaper changes, AND they expand to grow with him! I LOVE THEM!


That night we had some severe weather come through. There were a few small tornados that touched down, but there wasn't any major damage. We kept a close eye on the news just incase we needed to run to the basement.


November 11th, was Remembrance Day and Veterans Day. Theo's school asked us to send in a photo of anyone in our family that had served. We sent in a picture of my Papa Neilson and they put together a slide show for our Veterans. 






Thank you to all the Vets who have served and thank you to those service men and women that currently serve (special shout out to Darryl, Zach, and Tyler)! 

Theo has been SUPER busy this week! He started saying "bababa," "papapa," and a lot of g sounds! Theo currently says "dada," "mama," and "hi." He is VERY chatty and we love hearing all of his new words!


[School videos]

[Josh bought us this beautiful clock. I can't wait to add more pictures to our large empty wall.]


[Working on "pointing" and using one finger to do his work on the iPad.]

[Using a stylus]

[Baby Yoda and Elsa are always close by]


On Friday, November 13th, I got up early, watched The Mandalorian 🙌🏻🙌🏻, and then headed to the hospital to check in for my surgery.

[Why did I choose to have surgery on Friday the 13th?!]

Missy was going to come up and take me to the hospital, but they had a COVID scare so I told her to stay home. I appreciate that she offered to come up though!

 I checked into the hospital and was taken to my cozy room. The nurses then came in and put in my IV and told me how my morning was going to go.



The anesthesiologist then came in and we talked about my past experiences with anesthesia. I told him that last time I was under anesthesia I threw up A LOT. He took me seriously and had the nurses give me some medication through my IV and in pill form AND they put a seasickness patch behind my ear. 

My doctor then came in and told me how the surgery would go and how my recovery would be. Easy enough.

[It's go time!]

After about an hour in my room they took me to the OR. They moved me onto the operating table, put patches on my chest, strapped down my right arm, and then.... I woke up in recovery.

After I woke up the nurse ask me if I was in any pain. I told her I was just tired and promptly fell asleep. 

I woke up back in my room with a nurse. She gave me my phone so I could call Josh and tell him to come and get me. It was then that I realized my hip flexors were a little sore. I told the nurse and she said it was because my legs were up in the stirrups for about 45 minutes. Makes sense. 

The nurse then wheeled me outside where Josh and Theo were waiting with the car. Recovery was super smooth. I was a little tired, so I took a nap, but I wasn't in any pain and I didn't feel nauseated. YAY!

[Since September 24, 2019, I have closed all three of my Rings everyday. It's a matter of pride. But my streak came to an end on November 13, 2020. Josh volunteered to take my watch and go running for me, but I didn't want to cheat!]

I spent Friday and Saturday in recovery mode. Luckily, Josh was home and could watch Theo while I rested.



[Theo LOVES his iPad]

[Food play!]

Every other weekend Brady, Dane, and Cole go up to Detroit to visit Ryan, Kayleen, and Teagan. This weekend Cason was also able to join them! Looks like they had a great time!



[I love The Mandalorian]


At the end of the week I received an email from Theo's school informing us that they will be going back to full remote from Monday, November 30th to January 15th. It sucks BUT actually works really well for Theo's long recovery plan after his surgery. I feel bad for the other parents. Trying to get a three year old to pay attention to Zooms can be difficult. COVID hospitalizations and deaths are on the rise and we gotta do our part to protect our fellow humans. 

Monday, November 9, 2020

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?!]