Some of Caroline's last days in the PICU.
December 26 was a big day for both babies. A turning point. Taylor sent a very long text that morning after rounds. Our favorite doctor, the one I am always praising, was there that day. Taylor said, “The doctor is making moves. Caroline is coming off the nasal flow and will be breathing completely on her own today. He wants her feeding through a bottle every 2-3 hours and getting whatever she doesn’t take through the feeding tube. She’s going to wean completely off phentynal (a narcotic) and he wants her out of the PICU as soon as possible. He thinks the oscillator is no longer helping Will. He doesn’t want to keep him paralyzed anymore so they are going to put him on a ventilator today. The catheter is causing too many problems and since the surgeon won’t place a dialysis catheter he is going to change out the catheter himself. Will is also going to get a feeding tube and start slowly at 2mls per hour. He said that Will needs to try to move forward if he is going to get better.” This is a doctor who was willing to give our baby a chance, not just write him off as being potentially neurological damaged or irreversibly sick. So we moved forward.
Will's room at the end of December.
A few nights before I had talked to the surgeon about replacing the catheter with a true dialysis catheter. He didn’t think it was possible and I was devastated as I felt like dialysis was his only hope. If he couldn’t get fluid off and properly filtrate his blood, there was no chance for him to recover. The current catheter wasn’t working and the correct catheter could not be put in because the surgeon thought he would bleed to death during surgery, so the only reasonable option was to replace the current catheter with another one in a non-surgical procedure done at his bedside. I remember sitting in a chair in Caroline’s room holding her and I was facing the sliding glass door between her and Will’s room. The nurses prepared everything they needed to switch out the catheter. This still wasn’t the correct dialysis catheter, but it was one that should work better than what he had. I watched as the doctor and multiple nurses gathered around his bed to do this procedure. I felt helpless, anxious, sacred. I knew there was a very good chance that I could be getting ready to watch my baby boy experience some catastrophic event or even die. I knew there was a chance he could start bleeding and they wouldn’t be able to control it. I knew there was a chance doing this procedure would be too much on him and his heart would stop. I just sat there, holding Caroline, with all these thoughts racing through my mind. The charge nurse kindly stood between the rooms and updated me on the progress of the procedure. I heard their conversation, the doctor asking for this and that, and not really understanding any of it. Finally the nurse said that it seemed like everything went well. I was relieved but only for a little while.
Later that day they switched Will from the oscillator to the ventilator. The actual switch was terrifying but he made it over, still breathing. But could he maintain it? Could he take breaths on his own? What if he had to go back to the oscillator? Would there be any path for him? Only time would tell and we continued living hour to hour - every cycle of dialysis, every minute he kept breathing on the ventilator. One of the positive aspects of coming off the oscillator was that he no longer had to be paralyzed and could start moving around again. That day had a lot of moments when we were just holding our breath, waiting to see what would happen and wondering if our baby would survive. It was hard. It was also hard that night when Caroline left to go to the hospital floor. I have never felt such mixed emotions. I was so happy that she was getting out of the PICU. It meant that she was recovering, she was going to survive and probably be at home soon. But he was staying. She was leaving her brother behind and I didn’t know if they would ever see each other again. She knew him the best, they spent the most time together. They heard each other’s heart beats, kicked each other and were born only one minute apart from each other. They were separated in the PICU, but still close to each other and now she was going away. I asked the nurse if I could take her into his room to say good bye. She graciously helped me wheel Caroline’s IV pole and portable oxygen into Will’s room. I laid her on his bed and cried. They were so perfect and I knew that it was very possible that it was the last time I would ever see them together. I placed her back in her bed, told Will goodnight and pulled a red wagon full of all Caroline’s things up to another room on another floor. It was sad and happy. That walk out of the PICU felt victorious in a way but at the same time it just didn’t feel right. The life we planned for them was together, not apart. There was still so much that was unknown but so much to celebrate. I spent the night with Caroline and Taylor stayed with Will, just like our first night at the hospital. Caroline was up all night, practicing drinking from a bottle and getting through her withdraw symptoms. Will had a lot to prove that night.
Caroline in her new room on the hospital floor. She was weaned off oxygen and all breathing support. She got her feeding tube removed once she was taking full feeds from a bottle consistently and weaned off all her medications. We spent a lot of time helping her learn to eat and holding her.
The next morning, December 27, Will got a feeding tube and started getting 1ml of breastmilk per hour. After weeks of feeling like I could do nothing to help my baby, seeing him with a feeding tube was wonderful. All those hours of pumping were paying off and I could do at least one thing to help him get better. He weaned down on the epinephrine drip, the medication that was helping his heart continue to pump, got to a very low dose and eventually completely off. Since his paralytic was stopped the day before, he was now squeezing our finger, looking around and taking breaths on his own. He was maintaining a stable blood pressure and his heart function was improving.
I was in Caroline’s room when the cardiologist came to talk to me about Will’s echo. She was amazed that his heart was improving. She said it went from severely depressed to mildly depressed and she had never seen a child with a heart as low functioning as his recover. She saw no reason why he wouldn’t be okay. Even if his heart didn’t improve anymore, she thought he would be fine - no heart procedure, surgery or transplant. The main issue now was his kidneys. Apparently kidneys are very resilient and they usually recover on their own, although it could take weeks or months for this to happen. Now that his heart function was better, they were pretty certain that his kidneys were receiving proper blood flow and it would hopefully just be a matter of time. We ended 2017 with so much hope. Caroline was on her way home and Will seemed to be getting better - recovering even. He was becoming more alert everyday and acting very appropriately for his age, despite the brain bleed. Our little boy had made it longer and further than anyone thought he would.
This was the week when I started truly believing that Will would get better. I wasn’t delusional, I didn’t think he was right behind Caroline and I knew he had a very long way to go. I knew that there would be a lot more obstacles, procedures and potentially major surgeries to get him there. I thought he would most likely spend his first birthday in the hospital. I thought he may have to be moved to another hospital if he needed a transplant in the future. I knew he might have a disability, maybe even something severe. I knew he would likely be developmentally delayed and everything might be harder for him. I was aware that we would likely have a nurse in our home. We would have hours of therapy and have more doctors appointments than I could probably ever imagine. I knew it would be hard on our family and even change our lives, but for the better. He was our little boy and there is no obstacle, disability or complication that we weren’t willing to encounter. He was more than worth it. I really did think he would get better. I thought he would come home.
Sweet Will in the beginning of 2018 - so much hope!
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!