March 3rd was just a normal day. Evan and I ran errands, picked Cole up from school, had dinner together, and were getting ready to go to Taekwondo. And in an instant our lives were changed forever. Evan started screaming in pain holding his head and became very weak & nauseous. I immediately knew it was a neurological emergency and I threw both kids in the car and raced towards the emergency room. Cole and I were screaming and crying begging Evan to hold on as he lost consciousness. When we arrived at the ER I told them that Evan was having a stroke. The ER doctor told me that it was “highly unlikely” but proceeded to take him for a CT scan which confirmed my hunch. He had a large bleed on his brain & I truly thought we were going to have to say goodbye right there in the ER. But moments later, in walked Dr Jutzy (one of Evans Pediatric Neurosurgeons) who smiled at me and said, “I think we can do something here.” Evan was rushed to emergency surgery to place a drain in his head, and Dr Jutzy’s words gave me the glimmer of hope I needed to endure what was to come.
March 5th – 2 days after his brain injury
For over 3 weeks after, Evan faced a battle that most people will be lucky enough to never experience. Evan was diagnosed with an AVM, a rare congenital blood vessel abnormality on the brain. People can actually have these their entire lives, and may or may not ever cause a problem. In Evan’s case, he developed an aneurysm which ruptured and bled. It was a constant battle in those weeks to try to stabilize him and treat the aneurysm. Not only did an attempted angiogram to try to treat the aneurysm fail, he suffered respiratory distress from a mucous plug and a code blue was called. He had to have an emergency bronchoscopy to save his life again. He then developed severe vasospasms in the vessels in his brain which caused additional strokes, and had to have a second emergency angiogram to attempt to open the vessels. This was followed by trips to CT every other day, and as he was so unstable he went with a team of 2 RTs, 2 RNs & occasionally a doctor, to continue to evaluate the vasospasms to make sure they weren’t returning. To treat the strokes, he was intentionally fluid overloaded to perfuse the brain as much as possible – which also caused horrible swelling making him completely unrecognizable. The pressure in his head was so high he continued to need to be put in a deeper and deeper coma with the aid of barbiturates and paralytics. There were a lot of long nights with 4-5 nurses and a doctor in his room fighting to stabilize him while all I could do was sit there and shake. There was talk of not being able to extubate him and potentially needing a tracheotomy. I tried so hard to hang onto hope, but it was obvious the situation was incredibly dire and we were going to need a miracle.
And by the grace of God, we began to witness a miracle unfold. On March 28th we crossed our fingers and extubated him. He started breathing and opening his eyes. Over the following week, his breathing remained labored, but he continued to wake up more and more. He eventually started following commands, smiling at us, and moving his extremities. And our biggest miracle was yet to come.
April 11th – our last day in PICU just prior to transferring to the Pediatric unit
On April 16th, a 3rd angiogram was performed in another attempt to embolize the aneurysm in Evan’s brain. Once an aneurysm has bled, it has a very high risk of bleeding again and every single day it felt like we were sitting on a ticking time bomb. When Evan went back to surgery, I kissed him goodbye and said a prayer for peace and surrender – trusting that God would see us through. The mood had been somber with Evan’s doctors that morning. After the last failed attempt, we all knew that there was a high probability that it could fail again.
An image of the AVM
After waiting about 4 hours while Evan was back in surgery, our interventional radiologist Dr Bell came to the waiting room and told me he had some news. Not only did they successfully embolize the aneurysm, they got the AVM too. This wasn’t even something we had thought was going to be possible and had just hoped the aneurysm would be stabilized. We had been planning to pursue radiation treatments in the coming months to treat the AVM and there was no discussion of embolization even being an option. Covid be damned because I hugged Dr Bell as hard as I could and sobbed happy tears – and I hear there was a whole lot of high fiving and cheers happening in the angio suite too!!! We are so thankful to Evan’s incredibly skilled doctors (Dr Bell, Dr Perl, Dr Cherny, Dr Zouros, and Dr Jutzy) who didn’t give up on this incredible challenge. And so grateful to God for making a way. We witnessed a true miracle that day.
After his angiogram on April 16th. “This is the day the Lord has made. We will rejoice and be glad in it.” Psalms 118:24
I’ve always known how special Evan is…and in this very trying time he has touched the hearts of so many. We had a string of surgical staff coming to the recovery room after Evan’s angiogram, who had heard Evan’s story and had been waiting weeks for this day with their fingers crossed for us. People we had never met were congratulating us & just giddy with excitement. After his procedure we were sent back to PICU for observation, and all of our PICU family was just as excited as we were! They said they had been calling down the whole time trying to get updates. His anesthesiologist began to tear up and told me that she’s been following us very close since she first met us in the ER the night of Evan’s emergency surgery, because her own 3 year old nephew was lost in a horrible tragedy about the same time we were admitted. Seeing Evan hang on and continue to get better had brought her some joy in this time of her own personal grief. I still think of her often, and I pray for comfort and peace for her and her family.
April 21st – Evan’s first day of inpatient rehab
We are currently at Primary Children’s Hospital in Salt Lake City undergoing inpatient rehab. Evan has a long, challenging road ahead. He is having to relearn everything – from speaking, to eating, to walking. He has to rebuild his strength completely as even just sitting up independently is a challenge for him. Despite the difficult days here, Evan continues to make huge strides every day. He works his body and mind to the point of complete exhaustion, all with a smile on his face. Every day I am more and more in awe of his incredible strength and resilience. Evan’s name in Welsh means “God has been gracious” and in Celtic it means “young warrior.” Our young warrior is fighting hard and God is watching over him every step of the way.
Working so hard to regain strength! April 30th
During this time of great uncertainty in the world, we have seen that God still performs miracles. We are witnessing one unfold and I’m so incredibly grateful. God also sends his helpers, and boy…were we blessed with the presence of true angels. People who were strangers to us 2 months ago, are now our family. I can’t express the love and gratitude we have for the heroes at St Lukes Children’s Hospital in Boise. Not only did they expertly care for Evan saving his life over and over, they loved him like their own. They cried with us on the bad days and cheered with us on the good days. They surrounded Evan and stood in prayer at his bedside with us. They were just as giddy as we were seeing him make such huge improvements, and as one of his RT’s said, “he’s our miracle boy.” To his neurosurgeons, ICU doctors, rehab doctors, RNs, PTs, OTs, STs, RTs, CNAs, chaplains, child life specialists, social workers…you are all heroes. We’ve had the added aspect of facing a global pandemic during our time in the hospital, and the courage and sacrifice of our healthcare workers continuing to carry on despite their personal risk and fears is truly heroism. Thank you all and we love and appreciate you more than we can ever say.
Saying goodbye to a few of the incredible PICU doctors, nurses and respiratory therapists that saved Evan’s life before leaving for rehab
We all think that something like this will never happen. But life can be inherently cruel and unfair, and I now fully realize how fragile it is. Tomorrow is never promised and your life can be shattered in an instant. Don’t take any moments for granted. Hug and kiss your kids constantly. Don’t wait until tomorrow to spend time with them. Let them sleep with you, play with them, find joy in every day. All the little things you are annoyed with or bothered by day to day…realize that those moments are actually a blessing. Most problems in life really are trivial. When you are sitting in an ICU praying for your child to live, you truly realize that what you thought were tough days, are in fact a gift. Embrace them. And no matter what trials you may be faced with…don’t lose hope. Your miracle may be just around the corner.
“He performs wonders that cannot be fathomed, miracles that cannot be counted” Job 5:9