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  • Writer's pictureErin Marvel

6 weeks Post Surgery Update

Hi everyone! I'm sorry I sort of abandoned the blog once we got home. Life picked up and got crazy, and to be honest, I wasn't sure people would still want updates. But many people have told me they regularly check the blog, so I promise to be better about updating!

Patrick is absolutely thriving. We are currently going to physical therapy three times a week. He has mastered sitting up on his own, is a professional at rolling over (but only does it when no one is watching), and is working very hard to become a crawler! There are no major deficits post op that weren't there prior to surgery.

We are finally starting occupational therapy this Friday! We are hoping to continue working on strength and coordination in Patrick's left hand, as well as eating. Because of Patrick's stroke (and surgery), the left side of his body is weak and we aren't sure how much feeling he has on that side. This has made eating solid foods a challenge, as his tongue doesn't have the motor skills to move the food around. He has gotten exponentially better in the last month but this is still something we are going to continue working on at occupational therapy. Our occupational therapist sees her patients on her farm (!!) so we will get to play with baby chicks, bunnies and goats. P is going to love it. Stay tuned!

Another slight bump (literally) in our road has been swelling. When we landed in Denver six weeks ago, his head very gradually started collecting some fluid underneath his scar line. The surgeon had warned us about this before discharge and said it may happen, and it is normal. We kept a close eye on it that first week, but it very gradually got bigger and bigger. I sent daily pictures to Dr. Lam and her nurse team who assured us it was okay as long as his behavior wasn't changing and there was no sign of fever or nausea. I felt scared in the sense that the ONLY person I trust at this point to evaluate and determine next steps, if needed, is 1,000 miles away in Chicago. And after talking with Dr. Lam I think she felt the same way- it made her uneasy having us so far away. Eventually my heart just couldn't handle it anymore. I NEEDED reassurance that this fluid gathering was harmless (see below, you'll understand why I finally broke! His head got HUGE).

We flew to Chicago the day after Easter and had a beautiful, spring day out on the town! On Tuesday Patrick had a quick 1 minute MRI (where the nurse said he was by far the best patient of the day- of course), and we got to meet with Dr. Lam! We also had a chance to bring our favorite nurses some gifts for taking such good care of us in March.

P's MRI looked perfect! (Well, his MRI is far from perfect but it looked Patrick perfect 😂). No concerns at all and it was indeed just harmless fluid gathering. Did you know each of our brains, adults and babies alike, digests a soda can worth of fluid each day? P's brain fluid just had a little escape route in the spot on his skull that Dr. Lam had to remove, hence the fluid gathering there. Dr. Lam prescribed Patrick Diamox, an altitude sickness medication. It's also a diuretic. Patrick's head literally halved in size in the first 12 hours on the medication. It was amazing!

He is still on Diamox and will be for the foreseeable future, to give his head time to heal up without all the fluid. We get his blood drawn twice a month to check his electrolyte levels on this medication. We just did it yesterday for the first time and his levels look great!

For the first time in 12 months, we feel like we have a sense of normalcy. Brendan is so excited that golf season is upon us and has already gotten out there a couple of times. He also continues to be a dedicated Avs fan and has made both playoff games so far. I got to run my first post-baby half marathon in Fort Collins last weekend, and Patrick is living his best life and FINALLY sleeping 12 hours a night in his own crib!

P turns one this week (😭) and I will be sure to post a blog next week after we celebrate. Thank you all for following along this journey, we love each and every one of you! 🤍

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Apr 23, 2023

So happy to hear he's doing ok!! We're so glad you have such a great doctor. Yay for sleeping! That's huge under any circumstances. Sending love and continued prayers from the DeVans. 💙


Apr 22, 2023

Wow!! I had no idea and loved being able to read y’all’s story. Patrick, you and Brendan will definitely now forever be in my prayers. Love you guys!


Apr 22, 2023

Great to hear about recovery and that you got to run a half marathon. So thankful. Happy early birthday 🥳 Patrick.

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