A few videos of Will in February 2018. These song lyrics remind me so much of Will, he ran with perseverance and didn't quite until God carried his soul away. Take away all the tubes, monitors and devices and he is just a funny, sweet little baby :)
December 2017 seemed like the longest month of our lives, but January and February had a way of flying by. Early February was all about balance and waiting. Will’s heart function had started to backslide and the cardiologist seemed puzzled as to why. The reason that made most sense was fluid overload. Since Will was on dialysis 24 hours a day, there were times that he would have a positive fluid balance for the day and other times he would have a negative balance. When he was “positive” it meant that he had retained fluid over a 24-hour period, anywhere from a few milliliters to a few hundred milliliters. Extra fluid puts more pressure on the heart and lungs, making it harder for them to function, explaining the backslide. The specialists worked hard to balance how much fluid Will was taking in and putting out each day, trying their hardest to keep him balanced and even.
February 1st arrived with some good news after Will had an MRI. His brain bleed from being on ECMO was receding, not spreading or getting worse. It didn’t give any answers as to how the bleed would ultimately affect him neurologically but we didn’t have to worry that the bleed was going to affect more of his brain than it already had. As far as clinically, Will was acting and responding very appropriately for his age. He was physically behind because he didn’t have as much mobility with all the monitors and devices attached to him, but in so many ways he acting just like a normally developing infant. He was making a lot of improvements every week during his therapy sessions. He was moving all of his limbs equally, made eye contact and tracked objects. I got him a play gym and he seemed to like laying under it to look at all the patterns and toys. He also had a bouncy seat and a pillow that he sat up in as well as his physical therapy chair. Many nurses commented that if they didn’t know about his brain bleed they wouldn’t think he had any type of neurological issues. It all seemed very positive.
Unfortunately every positive had a negative (or a few negatives) that came along with it. On February 8, the cardiologist told us that they found a blood clot in the vessel going into Will’s heart during a routine echo. This most likely formed and broke off of the PICC line in his leg and could be potentially life-threatening. Once again, we were, as the saying goes, between a rock and a hard place. To treat the blood clot Will needed to go on a blood thinner, heparin. This would help his blood to flow around the clot so that the clot would not grow and hopefully dissolve on it’s own. Because of his brain bleed, Will was at high risk for bleeding, so going on a blood thinner was not ideal for him. If he could not take the blood thinner, there was a high chance that the clot would grow bigger and block off the vessel or break off and lodge somewhere else - his brain, lungs or heart - and become catastrophic. They did a scan to monitor the brain bleed and decided that since it had stabilized and was not still bleeding it would be beneficial for him to start the heparin. If at any time he started bleeding again in his brain or somewhere else he would have to discontinue the heparin.
When the cardiologist first told me that they found a blood clot I didn’t realize how serious of a situation it was. About twenty minutes later during rounds, the attending doctor laid out all the risks and potential outcomes of having a blood clot. He was one of the most sympathetic and honest doctors who had taken care of Will and I could tell he was worried and sad just like me. I held it together through the end of rounds, but right when they moved on to the next room I broke down. I just couldn’t believe something else was happening to my baby. He had already had so many complications, life-threatening situations and procedures and he had been doing so well for the past few weeks. One of the dialysis nurses who we had gotten to know was in his room changing out the dialysis equipment and stopped me to pray. I sobbed through her asking God to heal Will, dissolve his clot and help him recover. There are not many people, especially in the medical community, who we found would stop what they were doing to pray. Everything is so science-based, they look at statistics and worst possible outcomes. Meeting someone who trusted that God could heal when medicine didn’t was a true blessing. Meeting someone who was bold enough to pray out loud in the middle of a hospital was amazing and unique. God put certain people in Will’s life and she was one of the special people who loved Will and asked God to heal him alongside us. Grateful isn’t a powerful enough way to describe how we feel about her and many others - like the attending doctor who gave me a hug on my way out of the hospital that day. So much of the medical staff had grown to love our boy during the past few months. He really was so endearing, so sweet. I was so proud when doctors and nurses came by to check on him even when it wasn’t their shift or he wasn’t their patient. I loved when nurses came to help with his bath or play with him just because they wanted to see him. He was this little two month old baby but he had captured the hearts of so many. He had that special, indescribable quality that just drew people to him.
Will had trouble maintaining his blood pressure over the next few days but the clot never ended up causing any issues for him. His PICC line was moved to his arm and over the next few weeks the clot dissolved. Mid-February was fairly stable. Will worked with physical, speech and occupational therapy, we held him a lot and he became more alert every day. We tried to enjoy every single day with him while also planning for his future. He brought so much joy. I love him so much and think about these few weeks in February as some of the best memories with my sweetest baby boy.
Photos of Will in February. Every time I look at these photos I am overwhelmed with what a sweet little guy he was. I wonder what he would look like today...
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!