Just The Beginning: Arteriovenous Malformation, Brain Surgery, and Other Updates

Before I begin, a little about Path:

Path is 16 years old, a sophomore at St. Joe High School, and she recently started her first job at Barnstormers Pizza. She is known for her determination (stubbornness) and sheer force of will, as well as her caring and empathy for others. She loves reading so much that she frequently drives herself to the SJ and Lincoln Township library to check out their new books. She loves art - both making it and attending museums, rugby, her friends, and music! Hozier and Chappell Roan are some of her favorites. 

On Monday, December 2nd, Path (age 16) called her mom to come pick her up from school because she had a migraine. It quickly became apparent that it was much more than a migraine when Path lost consciousness and her heart stopped. She was rushed by ambulance to the ER and had to be intubated. Tests concluded that she had an Arteriovenous malformation in her brain. 

From the Mayo Clinic, "An arteriovenous malformation, also known as an AVM, is a tangle of blood vessels that creates irregular connections between arteries and veins. This disrupts blood flow and prevents tissues from receiving oxygen. An AVM can occur anywhere in the body, including in the brain." 

Path was transferred to Bronson Monday night, and Tuesday afternoon she underwent brain surgery to remove the AVM. At this point, they don't know how much brain damage was caused by the initial hemorrhage, however, the good news is they were able to completely remove the AVM with no complications. 

UPDATES - Below is a summary of everything that happened from the start: 

Dec 2: Path is rushed to the hospital due to falling unconscious and heart stopping. SJHS administration, sports therapist, and safety officer respond immediately, and the EMTs arrive within minutes. They transfer Path to the hospital, where the ER staff stabilize her and prepare her for transfer to Bronson Children’s Hospital in Kalamazoo. Meanwhile, the ER runs a CT scan, which identifies the cause of Path’s collapse to be due to Brain AVM (arteriovenous malformation). 

Dec 3: Path arrives at Bronson Children’s Hospital where they perform another CT scan and proceed with an endovascular embolization in the early hours of the morning. However, they are unable to complete the embolization to reduce blood flow into the AVM due to how the blood vessels are clumped together, which may lead to further damage. The next step is to remove the AVM (resection), but due to the trauma Path has been experiencing, she needs some time to recover before the invasive procedure. In mid-afternoon, the surgery begins, and ends after 4 hours as a success with complete removal of the AVM.  

Dec 4: Path is hooked up to an EEG machine with constant monitoring in the PICU ward. Fortunately, there are no seizures or other signs of concern and after a few days she is removed from constant EEG monitoring. 

Dec 5: Path starts reacting to being moved and responds to requests to open her eyes. Although this is a struggle, it is a positive sign of her progress! 

Dec 7: Path starts squeezing the nurses’ hands upon request. 

Dec 9: MRI results are reviewed, showing a weak left side and injuries with the brain that will potentially improve with time and occupational therapy (OT). OT and PT begin to exercise her arms and legs and allow her to not remain in a prone position. 

Dec 10: Path’s lab work show good results, and she is starting to be weaned off of painkillers. Vital checks and eye checks are moved from every hour to every 2 hours. 

Dec 11: Path’s intubation tube (endotracheal tube) is successful removed! Although she is able to breath on her own, she is supported with a high-flow nasal cannula to ensure she maintains healthy oxygen levels. 

Dec 13: Path starts exhibiting signs of neurostorming, a not uncommon reaction to a brain injury. She is placed on medication to reduce and manage the reaction, and fortunately she is very responsive to it. 

Dec 15: Path is maintaining positive progress, and is resting well. She is no longer on any IVs, the high-flow nasal cannula is removed. She is responding to OT/PT. She is not fully conscious/awake yet, and we are not given any expectations on when this may happen. At the moment, she is recovering and improving. During these days, Path’s parents are staying with her constantly, reading to her, playing music for her, decorating her room with pictures from her toddler years, school, rugby, travels, etc… as well as Get Well cards and Christmas cards that friends and family have shared. 

Dec 16: Path had her second spa day yesterday to get the adhesive from the EEG out of her hair. She’s been resting well and holding her own without additional oxygen since Sunday morning. 

Dec 17: We have some positive updates: this afternoon Path has her Gtube surgery which will provide her with nutrition and medicine. This will allow the tube down her nose to be removed -which will make her a lot more comfortable. Additionally, we spoke to Mary Free Bed (MFB) people and as soon as Path is stable (from what we understand- has the Gtube surgery and is comfortable after) she will be transferred to MFB potentially as early as the end of the week. Yay!!! 

Dec 19: We are preparing for Path being transferred to Mary Free Bed in Grand Rapids at some point today. We are waiting to confirm transportation, but we are very excited about the progress she has made over the past few days. While we are very grateful for the care she’s received at Bronson hospital, we are excited for the next step in her recovery. While she is still unconscious, she still has OT and PT daily which challenges her but is amazing to see. 

Dec 21: Yesterday Path was transferred to MFB in Grand Rapids. Today, she has just completed her first day of PT, OT, and speech. We are enjoying seeing her out of hospital gowns and surrounded by her own items as she starts the next part of her recovery. 

Dec 26: I chatted with Elizabeth earlier today. There's really not much to update at this point. Path is doing ok. Still a little up and down but going through PT, OT, and speech therapy. She’s definitely working a lot. I know I'm not the only one who has been a bit confused about the concept of speech therapy while she's still considered unconscious, so I asked Elizabeth to explain a little better how that works and this is what she told me: Path is still unconscious but has periods of being more awake (her eyes open or she starts moving around a bit more) the speech therapist works with her to help “wake up” her body. Path will be working on building new pathways to communicate with her body. So the original way her brain told her arms to move might not work so she needs to find another way for her brain to tell the arms to move. The speech therapist works to have her open her mouth and try to start making noises again. She’s not used to using her vocal cords yet. It’s pretty amazing to watch. 

Dec 30: As 2024 comes to an end, we have more good news! Path has had a couple good days in a row and the doctors are happy with her progress! With that comes some big news on the next steps: The doctors are going to monitor how well the storming is being controlled; If there are no issues, they will potentially give her stimulants (like Ritalin for example) early next week, to increase her mental capabilities and start waking her up! 

Jan 4: We are still working on establishing a comfortable baseline for Path. She has busy days - most days she gets Speech (where she works on keeping facial muscles toned and ‘waking up’ her vocal chords again), OT (where she focuses on sensory stimulation of her limbs to make her aware of her body again), and PT (where she works on learning how to make her body to what we ask her to-like move her leg.) Although it’s a struggle at times to remain patient - she continues to move in the right direction. There are good days and bad days, but overall she continues to make progress and improve. Today her Aunt Amanda and family stopped by to give her hair some much needed love and attention. January 8th: We’ve had some good days in a row and promising signs-they started the stimulants today and we’re hoping to see more alertness in the next couple of days. 

Jan 11: We’ve had a couple days of using the stimulant to wake Path up. The good news is she is more alert during the day - she has longer periods of awake and her eyes are definitely opened more. The bad news is that with the increased alertness comes the awareness (for her) that something has changed and she isn’t able to (currently) move her body as she did previously. She will need to learn how to make her body move again. While it is a lot of work going forward, she is making progress in OT/PT learning how to use her body again and is making a lot of progress in waking up her vocal cords again. This morning we watched her favorite show and enjoyed a quiet morning. 

Jan 14: Today was a very big day for Path. By raising her arm, Path is able to respond to yes/no questions, and she is able to read a screen. Her doctor believes this week will be a breakthrough week for her. As of now, she’s resting comfortably - but we cannot wait to see what the next few days hold for her. Today is definitely a good day. ♥️♥️♥️ 

Feb 2: It has been a very up and down couple of weeks for us. Path has had some tough days as she has been struggling to find food that she is able to tolerate - which made feeds really uncomfortable for her. She has also developed an additional infection which required a lot of tests to make sure we understand how to treat it. On the good news- we finally found a type of formula that she is able to tolerate and is able to take in calories without the discomfort. Her infection is being treated and is doing well. We are also in the process of preparing her for another surgery in about 3 weeks (date will be confirmed) at Bronson. Here’s to a new month full of healing and progress. ❤️ 

Feb 17: it has been a busy few weeks! We have been working with the team at MFB and Bronson to schedule Paths last big surgery - which is on the books for 11 March. She has made some progress and we are excited to see how she continues to push herself. On Friday, she had two times where she was given the option of taking a break or keep pushing through the discomfort and she kept going. While she is definitely uncomfortable at times and frustrated - the way she continues to do her best each day is an inspiration. ❤️❤️

March 1: Happy March! We are in the countdown to surgery day and are looking forward to the end of the big surgeries. We are also starting to prepare for Path’s return home - which will mean a lot of coordination between MFB, Corewell outpatient, and Riverwood to provide her with the level of support and care that she requires. This week Auntie Anna was on hand to help with the care of Path at MFB. Path was put in a cast to help with the high level of tension in her ankle (imagine if your ankle was constantly pointing down and locked in that position- ouch). She’ll get a new cast on Monday to put her foot at a tighter angle which will help her mobility going forward and continue to stretch her ankle.

If you would like to help Path and her family with the financial impact this medical emergency is having on them, please go to https://www.spotfund.com/pathappleton to make a donation. Any amount helps. Also, keep an eye out for fundraiser events in the near future.