This is an entry from my dad's (Will's Grandaddy's) journal from January 20, 2018. See his entry from Christmas Day here.
January 20, 2018
Room 312, Wolfson Children’s Hospital
It is impossible to write what you feel. It’s almost just as impossible to say how you feel. There are no words for this. I feel layers of emotions that are unfamiliar – they are layers, one stacked on top of another. There is no rule book or road map for this journey, it’s like a slow ride on a merry go round in the fog. Things are happening, you kind of know it but you don’t really. See, I told you it was impossible to write how you feel because that definitely doesn’t capture it – sounds stupid actually.
I watch our daughter grieving, I feel her, I mean I really feel her. I can’t look at her for long because I start to cry. Daddy has to be tough for his little girl. I drive her to the hospital and she sobs the entire way, I try to hold her hand and say things that will comfort her. But there are no words. I feel hopeless, useless. I feel for Courtney, I feel for Taylor, I feel for the twins, I feel for Emma Grace and Joshua, I feel for Candy (Will's Lala). We are sharing a bond we never wanted to share, we look at each other and know but we don’t say much really because we don’t know how. It’s more than words can describe.
I think my daughter is an angel, I always have. Courtney sparkles, always has. Her eyes exude peace and love and hope, all the things life is made of. She’s a sweet angel. A natural mother, a nurturer. But she warms and shines on others around her too, not just her children. It’s just her way, her gift. God put Courtney here to have Joshua and Emma Grace and Caroline and Will. These children will bless this world in countless ways. Like a blanket over so much meanness and problems and sickness and hate, it’s the will and love of people like Courtney that really powers the world. This world rotates on that will, it’s a force of hope that is more powerful than anything human or of science. It’s God’s power delivered through worldly mechanisms. It’s not easily recognizable if your brain is more engaged than your heart. But it’s how God works. And there are no words to describe it. But it’s absolutely obvious, God is everywhere and everything. Everything happening is God’s will.
It’s 10:00 am at Wolfson Children’s Hospital room 312. Will got a tracheotomy on Tuesday, January 16th. The doctors’ objective now is to free up his mouth and throat, he had been intubated, to allow him to eat like a healthy baby. The trach procedure went well but he’s had some complications this week. Had elevated a fever a couple of nights. There is fear of infection but lab tests have not returned yet so they are not sure. He seems better to me this morning. His fever is gone. He is doing well on the dialysis. He held my hand and looked at toys for over an hour. I showed him Horsey and Snoopy and Mickey Mouse and Gator. We played his music mobile. He followed it, very responsive and funny. Wouldn’t take the paci. Sleeping now. I write in my journal beside his bed.
Joshua’s birthday party is happening right now. I’m here with Will so Courtney and Lala can be there. He’s having a Disney Car’s themed birthday party at a bounce house place I think. It’s a cool and sunny January day. About 36 degrees when I got in the car to come here this morning. We have the blinds open on the windows to Will’s room and the sun is shining in. Will is sleeping peacefully now. At home, things are stressful but blessedly so. Joshua and Emma Grace take turns staying with us over night. Courtney stays at home at night with Caroline. Taylor stays over night at the hospital with Will. This is the new normal for now. There is no time frame for when Will will come home. Taylor I think will go back to work about mid-February so the normal may change again then too.
We have seen and heard things over the past seven weeks that you never expect. So many doctors, so many different prognoses, points of view, approaches. The thing you do – the socially acceptable response it seems in this situation – is to just gush about how incredible the doctors and health professionals are. To be sure, we are thankful for them and we pray to God to do his work to heal Will through them. But the experience is also a reminder that people are only human. Some of the providers are emotionally present, warm and caring – others are somewhere else, emotionally disconnected and robotic. The hospital workplace culture seems to me like every workplace culture I have ever known, so it is very familiar to me. Some people have higher emotional IQ than others. Some people express and connect while others are elusive, insecure, hiding, paranoid, unsure. Some work with you, some work against you. Some collaborate, some won’t. Some take responsibility, some blame others. I think about this all the time because my own work culture is rife with individuals with higher IQ but lower EQ. To me, however, It seems somehow less “ok” for a health professional to also be an emotionally void robot – but intellectually I can understand how this profession would both attract these types of people and create them.
The doctor doing the rounds today and especially the younger intern with him – were both about as emotionally present as a tomato. They were a little like the computers they were pushing around, but not as impressive as the computers. People can inspire more than all of God’s creatures I believe, but they can also disappoint more than any other too. I take this as a lesson to myself to be the change I want to see in others. It’s a common mantra I try to tell myself every day. We can’t make anyone feel, or try harder, or care more, or go the extra mile, or be as strong as Will. But we can do it ourselves – and that light will hopefully shine on others.
There’s a feeling on the PICU floor that I sense, one that is unfamiliar to me. It’s an ominous mood of despair and hope all together at the same time. To soak it up, I walk around and take a couple of laps on the PICU floor. Nobody sees me, they are too busy in their iPhones and computers, reminds me of my own workplace. There are many rooms, one after another filled with a baby or young child maybe nearly or more critical than Will. I think, this is a world few people ever know even though there are so many children on this floor. Most of the babies in these rooms are alone, they don’t have a parent with them. A nurse or doctor or housekeeper might whip in and out but few linger. A nurse told Candy that Will is rare because these babies don’t usually have a family member always present. Courtney and Taylor are Will’s advocate every minute around the clock. Everything a doctor suggests receives discussion, analysis and questions. Even more is understood before action is taken, they remind the healthcare providers that Will is a human being, that he is being prayed for by thousands and that they trust God’s Will. Every healthcare human being also gets prayed for along with thankfulness. As I observe this I think, yes this must be an extraordinary experience for these folks.
Just had a flurry of activity because Will was very agitated. I think moisture in his breathing tubes may have made his breathing hard, or maybe the dialysis is agitating him, making him uncomfortable.
Just talked to the nurse. It seems it’s the dialysis that is bothering him because it makes it hard for him to breathe. The dialysis fluid goes in over a period of about 15 minutes, then it fills up Will’s stomach so it pushes against his lungs and makes it difficult for him to breathe. Then they drain him and he calms down. So that must be what makes him so visibly uncomfortable today? Nurse says this cycle will continue, 15 minutes fluid in, 15 minutes to drain out. Over and over, 24 hours a day for who knows how long? When Will is in pain he cries but makes no sound, the trach muffles it. His fists clinch, his face in agony. He screams silently. I can’t stand it, I hover over him and try to soothe him, I rub his head, I rub his arms. It’s impossible not to cry. How long can this go on? This can’t be right, I think. I pray again for God’s will and Will powers through another round of dialysis. My own heart aches, it’s exhausting to me. But Will powers on.
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!