By mid-January Will was on a path. He was stable and making small improvements each day. His recovery would be a long, slow process, but we truly believed he would get better. We were thinking of the future - a month, six months, a year - and planning how we could help Will have the best life possible. On January 10 the medical staff started talking about Will getting a trach for long term respiratory support. He had been weaning slightly from the ventilator, but not enough to be extubated in the near future. There are complications that can arise when a child has an ET tube (the tube used to intubate a patient on a ventilator) for a long period of time, so a tracheostomy (the surgery to get the trach inserted) was the safest way to give Will the support he needed. Having a tracheostomy meant two things in my mind. One, he was stable enough to get the surgery. Two, he would be a technology dependent child for as long as he had the trach. The doctor thought he might need it for a few years to give his lungs time to develop and outgrow the pulmonary hypertension that he had developed. The thought of taking care of a child with special needs who requires medical support to live was slightly overwhelming but nothing we couldn’t handle. Taylor and I were certain that we could learn to care for Will’s trach for as long as he needed it.
Will’s tracheostomy was on January 16. The surgery went well with no complications and for the first time Will didn’t have anything on his face except for his tiny feeding tube. He was so cute and I could just imagine him as a sweet little toddler running around with his trach - I have these little green plaid overalls for him and for some reason I always imagined him in those. From that day on we tried to watch and learn as much about Will's trach as we could. We started by just observing the nurses as they took care of him and his new trach. They changed the ties daily and changed the trach about once every week. His ventilator settings were adjusted frequently and we tried to learn about all the settings and numbers on the ventilator as well. Soon we started helping with trach changes and changing the trach ties. Of course Taylor could do it all without a problem and with much more confidence than I could. I was more cautious, scared I would hurt him or cause an emergency. The trach is inserted through a hole in the child’s neck called a stoma and there are two velcro ties, one attaching to each side of the trach, that go around the child’s neck and attach in the back to hold the trach in place. Every day those ties have to be changed out and the neck area has to be cleaned. It’s a whole process involving a lot of supplies. The nurses could change his trach ties by themselves in just minutes and were very patient when they were teaching me and letting me practice. Will cried most of the time his trach ties were being changed, so I wanted to go as quickly as possible so he could get comfortable again, but I was so careful that it took a long time. After doing it a few times I got more comfortable, still slow, but I felt proud that I could do something to take care of my son. We were prepared and ready for life with a trach and we had so much hope that it would help give Will the time he needed to get better.
Before Will got a trach I knew literally nothing about it. The only person I knew of who had a trach was Christopher Reeve. So when the doctor first mentioned that Will might need a trach, I googled Christopher Reeve. I mostly wanted to see what a trach even looked like and maybe gain some insight as to what it might be like for Will to have one. I watched a few videos of him talking with the trach and read about his accident and what his life was like after. Obviously Will's situation was very different, he wasn't paralyzed and didn't have the same type of injuries as Christopher Reeve, but they had the trach in common and that was a big part of each of their stories. As I was reading I ran across an article about an interview with Christopher Reeve from 1998. It focused on his life before and after his accident and the transformation he went through. There was part of the interview when he was talking about the days after his accident and he was contemplating asking the doctors to remove his support because his injuries were so grave. When discussing it with his wife she said she supported whatever he decided and that she would still be in it with him for the long haul. Then, he says, she added the words that saved his life, “I love you. You are still you.” We felt the same about Will. He was still Will. Whether he had a trach or not, whether he had a disability or developmental delays, whether he was sick or healthy, whether he needed medications or dialysis or special care or not, he was still Will. He was still ours. Reading about Christopher Reeve helped in a way I didn’t expect it to. I researched him merely to see what a trach looked like and ended with a profound confidence that we were doing the right thing. The option to stop, to remove support and let him pass was still there. We didn’t have to move forward with the tracheostomy, but reading those words confirmed what I was already feeling - just because Will needed extra support didn’t mean he was no longer Will. It is inspiring to read about someone who makes a tragedy into a blessing, turns heartbreak into something positive and Christopher Reeve did that. Will did that.
After Will got his trach he had a hard time recovering. There were a few days and nights when he spiked a fever, had a high heart rate and was breathing fast. It was scary for a few days because we didn’t know if he had gotten another infection that would maybe start attacking all his organs again. After a few days he was much better and back on his path to recovery. We were praying for his kidneys to start functioning, for his heart to get stronger and for his lungs to continue developing. We prayed that God would give him a full recovery and believed with confidence that God could do it.
Believing with confidence is easy to write, hard to do. Christians hear a lot about having "faith of a mustard seed." It's from a passage in Matthew and another in Luke when Jesus is talking to his disciples and tells them if they have faith the size of a mustard seed then they can move mountains. A lot of times in my life, and especially during Will's life, I have felt like if I just had more faith, more confidence in God's promises, if I just didn't doubt Him at all, then I would see God do amazing things, move mountains. What's encouraging about Jesus' words is that a mustard seed is really, really small. Will taught me what it looks like, what it feels like, to have that type of faith. There are many times during Will's life when I was discouraged, heartbroken, helpless, I questioned God and I didn't understand why Will was so sick. A lot of times I fell into the trap of feeling that if I just had more faith in God that He would heal Will. I was so arrogant to think that my faith had so much to do with it, like it was somehow all on me. God tells us to have faith of a mustard seed because the focus is not on our faith, the size or amount, it is on our God. Faith is putting your trust in WHO God is - He is the object of our faith and so often we tend to make ourselves or our circumstances the focus. God never promises health or wealth in the Bible. God promises eternal life to everyone who believe in Jesus. God promises Romans 6:23, "For the wages of sin is death, but the gift of God is eternal life through Christ Jesus our Lord." Just a little bit of faith, mustard seed-sized faith, in a God as good, as powerful and as almighty as my God is sufficient. It's enough to witness the miraculous, move mountains, because that same faith is enough to secure my eternity. It's not about how much faith I had that God could or would heal Will, it's about who I was putting my faith in, continuing to declare Christ and trust in Him. I saw miracles, over and over, in that PICU as my two babies overcame incredible odds, lived when they shouldn't have and survived when we were told they would not. Will getting a trach might seem discouraging, he was going to be a ventilator dependent child for the foreseeable future and there are challenges that come with that. But mustard seed faith means that God is bigger than any technology, He is bigger than any diagnosis and He is bigger than any challenges. God is good no matter what.
We didn't see Will's trach as a negative or a set back, we saw it as a step in his path to recovery. He was still Will, still our baby boy, whether he needed extra support or not. A lot of learning, a lot of humility, a lot of unknowns. I learned a lot about mustard seed faith and a lot about Christopher Reeve, a lot that gave me perspective and confidence, but my most favorite thing about him - his son’s name is Will too. I like that.
Will before and after his tracheostomy. The picture on the left shows him intubated, the ET tube is coming out of the side of his mouth is a taped down across his face. The picture on the right is from the day he got his trach, it is the tube coming from his neck. Both were attached to the same ventilator that gave him respiratory support while he recovered.
Our mission is to glorify God by supporting children undergoing life-saving heart treatment and creating a caring community for their families in honor of our son, Will.
My name is Courtney Hughes and I am Will's mommy. I am happy that you are here to read Will's story and make a difference with us!