As with everyone in the world, 2020 has been a crazy year for the Heilmans as well. The year started optimistic but took a swift turn at the end of January when Neeley landed in the ER after passing out at home after an intense swim practice. Thankfully, she sat down as soon as she felt off and called for help. I found her in the middle of the kitchen floor, right when she slumped over. We got her to the E.R. within minutes of the episode. Having P.O.T.S, this isn’t our first rodeo with Neeley. We take them all seriously, but at the time we didn't panic as much. The E.R. staff at TGH Brandon Healthplex got her fluids and monitored her for a couple hours and sent us on our way. This seemed to be just a minor setback…or so we thought.
March rolled around and we heard rumblings that a pandemic was on the rise. Fears of losing a child came to the forefront of my mind. Having lost my oldest daughter at the age 15 due to multiple immune/medical issues and now having two teenagers with compromised immune systems (along with other health complications), my fears were a bit warranted.
Unfortunately, it wasn’t COVID-19 that hit our house in March of 2020. It was another “passing-out” episode for Miss Neeley. This time, it was much worse. She was only an hour into a swim practice when she started feeling sick. She went to the bathroom to get some water and see if she could avoid the nausea. She felt the flush fill her body and quickly went to the floor before she blacked out. We still don’t know how long she was out, but when she woke up, her legs had no feeling and she couldn’t muster enough strength to call for help. We now know she was in there 20 minutes before a kind grandma found her and got her the help she so desparately needed.
The staff at Brandon Sports and Aquatic Center were amazing and got Ben’s phone to call me immediately. I was walking around the neighborhoods near by and quickly ran to find her still on the floor with staff surrounding her. Still without feeling in her legs and being short of breath, we called 911 and returned to TGH Brandon Healthplex. I knew this was a “bad one” – but I did not know just how bad. We gave the doctors her medical history and they quickly got her fluids going through an IV. The E.R. doctor felt there was something else going on this time and ordered labs on some cardiac enzymes this go round. When those results came back, the room took an ominous sense of urgency. Cardiology was called, more labs were drawn, and we were told Neeley would be transported to Tampa General’s PICU immediately. Her heart was not functioning properly. The pediatric ICU did not have a bed available at that moment and they didn’t want to transfer her until she would have direct care, so they kept us in the ER in Brandon with a nurse in the room, until transport was ready at 1am. That group of doctors and nurses were amazing to us. I recently looked back at the medical records from that night and saw her chart,which noted “the patient is in critical or guarded condition” as they prepped for transfer to the ICU.
Those were some scary days for us as we began a new journey, unbeknownst to us, with Neeley’s medical issues. After a few days of excellent care in TGH PICU, it was determined that Neeley most likely had pericarditis due to a virus (not COVID). We went home with her having full cardiac rest for six weeks and we also entered the world of COVID-19 as school was soon switched to e-learning and swim practices went on hiatus for a period of time.
After that scary episode, we thought Neeley was on the mend and returned to swim by Summer in the best shape of her life and was having some amazing practices. In fact, it was just a day prior to her next episode that her Coach told her that he had never seen her so strong and fast in the pool. Neeley came home that night on cloud nine. She told me she felt pure joy in swimming, like she once had for soccer. I remember being so happy to see my girl smile. To see her so healthy and strong. You see, by now it was September 2020 and my girl had faced so much pain this year. Not only had she had been dealing with her own medical issues, but she had also been dealing with the loss of her best friend, Avery. In April, just a few weeks after getting Neeley out of TGH’s PICU, Avery was admitted there. Sadly, and painfully, Avery did not survive her stay. Our hearts were broken for this loss, one that will leave an indelible mark on all our lives, but especially Neeley’s. Neeley had taken the time in quarantine over the Summer to grieve for Avery and to live for Avery. She decided to commit to making her body as healthy as possible, because she knew Avery no longer had that chance, nor did Neeley's sister, Halle, who died five years earlier.
Fast forward to September 23, 2020 the day after that amazing practice. Neeley had been excited to return to the pool and get herself back in the water. She quickly realized she was “off” after about 30 minutes into the training. She now knew the signs of her body going into distress. I got a call from her, this time she remained conscious, but she did not know for how long. It only took me 10 minutes to get there, but I could tell right away, we would need to head straight to the ER. This time the chest pain and shortness of breath were worse, and she had no color in her face. Fortunately, she was able to walk to the car so I could drive her myself. Again, we returned to the TGH Brandon Healthplex with my girl feeling weary. They got us back quickly and started the fluid protocol. We had mentioned the previous episode of elevated troponin levels, so the ER doctor ordered labs for those too. It took awhile for the labs to come back but when they did, we realized Neeley would be headed back to the PICU. Her heart was swelling and in distress again.
That episode landed her in the ICU for 3 days with little to no answers as to what was causing her body to go haywire. Her cardiologist recommended we see a top cardiomyopathy specialist in the state and got us on his schedule for early October. But in the meantime, Neeley was back on cardiac rest. This was not easy for the girl who found fitness and working out to be her therapy, but she hung in there.
The new cardiologist was amazing and acknowledged that he wasn’t sure what was going on, but promised to help us figure it all out. He then referred Neeley to two more specialists. It was jointly decided that Neeley could no longer swim competitively. Another loss for my girl this year. They recommended a less cardiac intensive sport like golf. Neeley didn’t skip a beat and found my old clubs and asked for a few lessons.
We are now in December and Neeley is still on mild cardiac rest. She has another new doctor in a couple weeks and a few more tests ahead of her. The information they are finding is helpful to understand how her body works but discouraging as there is no real treatment for her condition. Rather, Neeley must learn to live a new lifestyle and slow down her pace. This is not something easy for Neeley – if you know her at all, you know it is like taming the Tasmanian Devil. But she continues to amaze me.
This past week she had two specialist appointments where she was given this news that there was no real treatment. She came home quiet and didn’t want to talk too much about it. Instead, I took her out to lunch, did a little Christmas shopping, and then she headed out to the driving range to find peace in another new sport. She is hurting but is not ready to share that hurt with us. I also had a tough time accepting this news this week. My heart aches for my girl who has experienced so much loss in her life. I question why this continues to happen to such a good kid. I want to know what I can do to make it all better. I try to hide my fears and anger from the sweet girl who is learning to cope with what life has given her…but some days I just wear my heart on my sleeve.
I haven’t wanted to talk to anyone this week, not even my momma…who I usually turn to immediately. I just threw myself into work and kept myself distracted. Leave it to Neeley to know me best. Last night Neeley went to dinner with a friend and came home with a dozen brightly colored roses. “I know the holidays are hard for you – missing Halle and all. And I know you worry about me. I hope this brightens your day.” I stood in the middle of kitchen and quietly sobbed, hoping she didn't see my tears. Here I am wanting to take the pain away from my little girl and instead she is taking the pain away from me.
2020 has not been a good year in general, but I want to take
a minute to find the things I am thankful for:
1. Roses from my sweet Neeley Jane
2. My CAF friend, Tricia, who reached out after reading about Neeley’s medical/sports challenges on Facebook and took the time to share her own medical/sports journey with Neeley. It truly gave Neeley a new fire.
3. Friends who reach out even when I am not ready to reach back to them and continue to reach out...thank you
4. Gnomes – they have been my holiday joy
5. My family – need I say more – those who live near and far are always with us
6. Beautiful family photos – Thank you Brooke
7. Being able to support Avery’s family (love to you Alysin)
8. New sports and old friends (thanks Erin for the golf tips)
9. Youth sports – I said this when Neeley had to let go of soccer…its not the sport that matters, it is the people we have met along the way that matter most and stay with us – we are grateful for all the swim families that have crossed our path these past few years
10. Neeley, Ben, and John – quarantining with you has been a true gift this year
11. My students and my job – I love teaching them and being a part of the journey
12. Facebook – for connection to friends during this crazy year
13. Our sweet kitty, new to us this year, Atticus
14. Neeley's friends who continue to be there for her despite the craziness of the medical world
15. Day trips to go out for a run or bike ride during Covid
16. Shirts that make me laugh sent from Canadian friends
16. New beginnings….may 2021 be full of Health, Joy, and Peace
Beautiful blog. Keepin you in my prayers