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  • Writer's pictureErin Marvel

Patrick’s Story- Part 2

Updated: Feb 26, 2023

I left off where the neurologist here in Denver was telling us that if and when Patrick fails this medication, brain surgery is our next best option to stop his seizures permanently.


When she said that, Brendan and I both felt such a relief. Brendan asked "why wasn't this our first option? We feel like it really is the only permanent solution to this and we feel as though it could have been done months ago." Turns out its standard practice, that you have to fail two medications to even contemplate surgery. At this point, we were under the impression that the surgery entailed going in and removing the abnormal brain tissue that had formed post-stroke.


We left that appointment all on the same page. We were going to get everything ready on our end and the hospital was going to get everything ready on their end to prepare for surgery, so that if he were to fail this medication, we could immediately have surgery without having to go through this process. To get approved for surgery, two things had to happen:


1. Our neurologist had to present Patrick's case to a board of neurologists and neurosurgeons. They looked deeply into his imaging, scans, EEG's, etc to determine whether or not they thought it was the best option. 7 out of 7 of them voted that yes, surgery is the next best option. We felt assured that all of them came to the same consensus (apparently 100% voting yes is unheard of).


And 2. He had to get a PET scan. He had to go under anesthesia, and they injected radioactive material through an IV that then lit up the parts of his brain that were functioning properly, so the surgeon knew what to remove.



We had checked all of our boxes and so had they. At our next appointment, our neurologist told us that they believe that although he hasn't failed his medication yet, it was time to proceed to surgery because his wacky brain waves were proving that it was only a matter of time until his seizures return. Fully trusting in them, we agreed. We set up an appointment to meet with the surgery team on January 9, 2023.


This was a long appointment. We met with our neurologist, the rehab team that would help him post surgery, a neuropsychologist, and the surgeon. They came in one at a time, gave us their talk, and then the next person would come in. The surgeon was last. When she came in, she broke the news to us that rather than just removing the abnormal brain tissue, they wanted perform a surgery called a hemispherectomy. A hemispherectomy is when the surgeon completely disconnects 1/2 of the brain. Since the right side of his brain is causing issues, they want to go in and completely disconnect it. They will leave the tissue in there but essentially unplug it so it is not functioning or connected to anything in his body.


That right there was enough for us to process for one day.... But the surgeon had to go into detail to tell us what to expect, because the assumption was we were proceeding to surgery rather quickly after this meeting. Like within a month.


Some other bombs dropped on us that day-

  • he will have a scar from the front of his forehead to the back of his head, then wrapped around his ear (the shape of a giant question mark)

  • 85% chance he'll need a blood transfusion during surgery

  • He'll be in the ICU for a week

  • Slim chance of him living an "independent life"

  • This surgery is rare; they do 3-4 per year. Our surgeon wasn't exactly reassuring when talking about how many she had performed herself

  • A lot more but I just started crying and blacked out the rest of the meeting


Thank goodness for Brendan, because he carried the rest of this appointment out. I had heard enough and once again, that sick feeling returned to my stomach. I'm telling you I have puked and cried more in the last nine months than I have my whole life! When we got in the car the first thing Brendan said was "I don't know how anyone leaves that appointment and thinks, yeah this is a great idea, let's do it." And I agreed. I had a horrible gut feeling, and my gut has proven to be spot on time and time again. If there is one thing I have learned the last 10 months- it is that mama gut is REAL. Do not ever question it. We didn't know what other options were out there, but this one wasn't it.


I think the hardest pill for us to swallow was that we believe Patrick is overall doing great. We haven't given him a chance- he's been on medication since he was 12 weeks old. Disconnecting half of his brain is a very permanent thing, and he really hasn't proven to need that extreme of a solution yet. Or at least we didn't think so.


The next few days were filled with lots of tears and just trying to process all of this information. We also began to research some options to go get a second opinion elsewhere. With the help of incredible family members with connections, we landed on two places to get a second opinion; Texas Children's Hospital in Houston, and Lurie Children's Hospital in Chicago.


Two weeks ago, the three of us headed out to Texas Children's for an overnight EEG. The purpose of this was for them to get an idea of Patrick's imaging and brain waves, and see if they would recommend the same surgery. When you have an EEG, they place a video camera and record you 24/7 so they can catch any abnormal movements. (Yes they also can hear you, and no that does not stop Brendan from inappropriate jokes. I had to give him the death stare like ten times). We are pros at EEG's by now; that was actually Patrick's 9th EEG since August. Talk about a trooper. Anyways, they determined that Patrick was indeed having seizures overnight, unbeknownst to us. We saw the brain waves alongside the video footage, and his brain waves would spike and his little body would very subtly flinch throughout the night. This was the clarification we needed that he had officially failed his second medication. They agreed that the hemispherectomy was his best bet at seizure freedom.



Before we left, their neurosurgeon came into the room. We immediately had such a good feeling about him; he was smart, caring, genuinely wanted to help. He was experienced, something we were unsure of at Children's Colorado. We left feeling optimistic and comforted that although the surgery is daunting, we have found a much better option than our original.


We came home, and decided we still wanted to go to Chicago to meet their team before making any decisions. We decided we don't need any more medical evaluations on Patrick, some of the best pediatric doctors in America have determined this is what's best for him, and we agree. At this point, it is solely a decision for Brendan and I to decide who we want to do it. This past weekend Brendan and I flew to Chicago for one night and left P at home. We got a Parent's Day Out, and full night of sleep maybe for the first time since April!



Monday afternoon we walked into Lurie Children's Hospital to meet with their Chief of Pediatric Neurosurgery. (There's a sentence I never thought I would say). Dr. Sandi Lam, who had just finished performing brain surgery an hour prior, came and sat with us in a conference room for 2 1/2 hours. She told us everything we could ever want to know. What would happen prior to surgery. What she does during surgery (she literally pulled up P's MRI and walked us through step by step). What he will look like and act like immediately after. What to expect that day. That week. The rest of his life. She's a mom to 4-year-old twins; she gets it. She fully gets my mama heart and my fears and my hopes for P and his life. I cried (per usual) at the end of the meeting, but this time they were tears of joy and relief. I told her that this was the third time we had had this conversation- once in Denver, once in Texas, and now here. I full heartedly trust Patrick's life in her hands... and that says a lot.


Oh, and the best part about Dr. Lam?! She does the surgery ENDOSCOPICALLY. Patrick will have a 4cm scar on his head, she will go in with a camera and complete the surgery with minimal blood loss, minimal trauma, minimal pain.

Now you're all wondering- what will Patrick's life look like? Although we really won't know until we know, Dr. Lam said...

  • he can't be a fighter pilot. He will have vision and will be able to see, but he won't have left peripheral vision in either eye.

  • The vision issue can impact his ability to drive. We are banking on self-driving cars by 2038.

  • He won't be a good violinist, as his left hand will struggle with fine motor skills for the rest of his life (who needs a left hand anyway?)

  • Other than that, the sky is the limit. She has past patients that play soccer, run cross country, are in grad school.

  • Yes, Brendan asked, and yes, he can golf


So, here we are, with the happiest, cutest little guy that is going to live the rest of his life with 1/2 of a functioning brain. (By the way, Brendan and I know WAY more about brains and their anatomy than we ever wanted). Brains are incredible, they can reroute themselves to learn things. And when you're only 10 months old, there isn't much to re-learn post surgery. Patrick's brain is just going to learn how to do things a different way. From what we know, and what Dr. Lam said, there's a good chance the left side of his brain has taken over most function at this point anyways.


We are heading back to Chicago next Sunday, March 5. We will be in and out of the hospital doing some pre-surgery evaluations, and surgery is scheduled for Thursday, March 9. We promise to update as often as we can. As always, thank you for your prayers. We know that your prayers are the reason we have such peaceful hearts going into this. We are SO looking forward to a seizure-free, medication-free Patrick here in just a few weeks!

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9 Comments


andrewphennessey
Mar 01, 2023

You both are amazing and best of luck in Chicago. So glad you feel comfortable with surgeon.

Travel safe and prayers to little Patrick.

Andrew and Drew

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peggyroberts329
Mar 01, 2023

Brendan and Erin, Patrick is so blessed to have such amazing parents!! We will be praying for sweet Patrick and for the surgeon, that God will guide her hands with skill and precision and to take the best care of your sweet little boy! We will be praying for strength and comfort for the two of you as well! We love you all! Mark and Peggy

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Eric Shannon
Eric Shannon
Feb 28, 2023

Love you guys and best wishes through this process. P is a rock star and so are you two

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kbradley3285
Feb 28, 2023

You three are amazing and have the most wonderful families for love and support. You are in our prayers everyday! Stay strong and hug each other often!

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bender1212
Feb 27, 2023

Brendan and Erin you are 2 amazing parents ❤️❤️

wishing you all the best next week

❤️🙏❤️🙏❤️

Patrick is going to do great 🥰

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