“Waking up the girls on Wednesday morning, February 5th, was a nightmare. They had just had the best night of their lives the evening before at the Washington Capitals game. Of course, it was a school night and the only way I was allowing them to go was under the stipulation they were going to school the next day, no excuses.
I remember Kinsley coming upstairs that morning, complaining that her head hurt and strangely her legs. Confused, I laughed and asked why her legs. She didn’t actually play hockey. She responded with ‘I think it’s just from jumping and dancing around all night.’ As bad as she must have felt, she never once asked to stay home. She was the toughest kid, but she also knew what the answer was going to be and so I sent them on their way. My phone rang around 11 a.m. It was the school calling. Kinsley had a fever, headache and was throwing up.
Kinsley tested positive for Influenza B the next day at a clinic. She was given Tamiflu and we were told to treat pain and fever by alternating ibuprofen and Tylenol. This wasn’t our first rodeo with sick kids. We have five kids in the house and have dealt with sicknesses like this in the past. I scrubbed the house up and down with Lysol and bleach to prevent others from catching anything and she was quarantined to her room for a few days. By Sunday, she woke up feeling much better. She was back to jumping and flipping off the couch and getting yelled at by her father and me. She sat at the kitchen table with her sister, making school valentines and talking. I could hear them deciding which friends were getting which valentines. Sunday evening, she participated in the family game night and went to bed super excited to go back to school, especially since she had a field trip the next day. Kinsley never missed a day of school, so being home for almost a week was painful for her.
Monday morning around 6 a.m., I heard her crying by my bed. ‘Mommy, my head hurts, my throat hurts and my chest hurts really bad.’ This child never cries and certainly never comes upstairs to wake me up. Now I was really concerned. I texted my good friend, Lacey, and she said, ‘You better be careful with that, I know someone who has died from the flu.’ Now I was officially freaked out and Google searching. Everything that came up said to get her to a doctor. I had my father-in-law come sit with Kinsley while I went to work until her appointment with the pediatrician at 4 p.m. By the time we got to the pediatrician, she was in bad shape. They really couldn’t hear anything different with her lungs but given the circumstances and how she had started to feel better and then got worse, they sent us to the ER just to be safe.
The ER did the entire run down to check her out. They did chest X-rays, EKG, took blood, tested urine, gave her an IV for fluids, and at the end of our time there, they sent us home. While she was laying there, I remember telling her how tough she is and how proud I am that she is my daughter. There aren’t many children that handle getting an IV with such toughness. On the way to get chest X-rays, she had a huge smile on her face because they pushed her bed there. ‘Mommy, this is so fun!’ She really did make the best of every situation, no matter what. She took full advantage of everything they offered her and while getting fluids, we sat putting together a puzzle, just laughing and talking. My child looked so sick, but every test says she was fine. It was just a bad case of the flu.
By the time we got home, she was exhausted. I was sitting on the couch with her, giving her meds for a fever when she threw up in my hands. She was burning up and barely had the energy to go to her bedroom, so we laid on the couch. Her daddy rubbed her back while she tried to sleep. I snuggled the rest of the night with her on the couch. I remember her asking, ‘Mommy, can I lay with you?’ Her chest pain was so bad by the next morning, she was really struggling to breathe. She was breathing weird and for a bit, I was getting mad at her because I thought she was being dramatic. It was scaring me. I mean, we were just in the ER and everything said she was fine. I just couldn’t figure it out. Something wasn’t sitting right.
I took a picture of her sitting on the floor in front of the toilet to show my husband. Her face was pale, her eyes sunken in, and her lips had barely any color in them. It was right about then that she coughed and when she spit in the cup, it was bright red. Her eyes looked up at me in panic. ‘Mommy, it’s blood.’ My stomach about hit the floor and I was in full-on panic mode.
The car ride is what I remember the most. In my rear-view mirror, I could see her weakly leaning her head on Ford’s car seat. I said, ‘Baby, Mommy needs you to keep talking to me so I know you are breathing.’ I kept looking up checking the color of her lips as I weaved in and out of cars. Every few seconds, she would say, ‘Mommy’ or ‘Hello,’ just so I knew she was doing okay. I can’t express the number of times I said, ‘I love you, boo,’ ‘I’m so sorry you are sick,’ and ‘You are so tough.’
Then in her weak, sweet, little voice, she asked, ‘Mommy, am I going to die?’
My heart dropped to my stomach as I raced through traffic, praying to God in my head. Trying to stay calm so my fear wouldn’t freak her out, I responded, ‘No boo, we are just taking you to doctor so they can make you better.’
She walked into Calvert Memorial ER and they took her back right away. Several nurses and doctors were getting her on oxygen and IVs while on the phone with Children’s National to get her transferred. Her dad walked over to her bed and loved on her, helped her with her mask, which was too big for her face. It was practically covering her eyes. She said, ‘Daddy, I think I need a break from the mask for a minute’ and we all giggled because this was typical Kinsley.
I leaned down and said, ‘Mommy loves you.’ She made eye contact with me and through her mask said, ‘I love you, too,’ while nodding her head. This was the last thing we said to each other. She was so weak and tired, she started to become lethargic and barely responded to any of us. After an hour of trying to get her blood pressure and oxygen levels stable, they decided it was best to intubate her.
By 4 p.m. on Tuesday, we were on our way into Children’s National PICU. The noise, commotion, and million doctors and nurses in her room were so overwhelming. I spent a while in the bathroom throwing up. My gut was telling me she wasn’t making it out of there. The nurses and doctors in the PICU were incredible. It was astounding to watch how everything worked so calmly and collected and everyone had a job and a place. ‘Your daughter is very, very sick and we are doing everything we can, but I am very concerned,’ was the first thing we were told.
By 10 p.m., the doctors were calling us to bedside. The nurse was on top of Kinsley, pumping on her chest. The sounds of machines and doctors yelling were all just background noise. My husband and I were crying, screaming, ‘Come on, baby. Stay with us. You can do it.’ My knees were so weak, I could barely stand up. They finally stabilized her and the doctor looked me directly in the eyes and said to us, ‘It’s time to put her on the ECMO machine. Without it, she will die. It is possible just putting her on it, she may die but it’s our only chance to try to save your daughter.’ I signed a consent for the procedure and at the top of the paper, it said septic shock and pulmonary hemorrhage. If you google those, the outcome is death.
She survived being put on the machine. I remember walking back to see her and all I could see was the top of her tiny head and a room full of machines. The girl laying in that bed was not my Kinsley. She didn’t even look like herself. She was so swollen, probably the only time ever in her life she would look that big. Her hands and toes were turning black from the infection. All I can remember for the next 2 days was holding on to hope. Any positive news was hope, even if it was small. In my heart and gut, I knew. I prayed for a miracle. In fact, I spend a lot of time talking to God.
Thursday, February 13th was the day we knew for sure we were leaving Children’s Hospital without our baby girl. My husband and I sat in a conference room at a table full of nurses, the head doctor, social workers, and care coordinators while they went down the list of ways she wasn’t going to make it. She would lose all four limbs if she survived. Her heart was not squeezing the way it should. Her lungs were full of fluid, which was pulling on her heart. Her kidneys were failing and she would die within 24 hours if they couldn’t start dialysis. Lastly, she had suffered a massive stroke and if she did make it out alive, she would have all kinds of problems with the entire left side of her body. What most likely would happen, is the pressure from the bad side of her brain would push into the good and she would be completely brain dead.
I felt like I was having an out of body experience. I sat in shock. My husband lost it, sobbing, with his head in his hands barely able to get out the words, ‘Is there any way possible, my daughter makes it out of here and is anything like herself?’ I already knew the answer. I couldn’t get out of the room fast enough. I cried. I screamed. I sat in silence and wanted no one to come near me except my husband.
I spent as much time with her as I could in the hours leading to her death, rubbing her cold arms, holding her small black fingers, rubbing her head, and talking to her. By 5 p.m., the nurse informed us all brain activity was gone and tomorrow, we would need to make the decision to pull her off the ECMO machine. I needed air. Being in the hospital felt like I was suffocating and my heart was in actual pain. We walked outside and as I rounded the corner of the building, the entire sky was lit red from the sun setting over the D.C skyline. It was Kinsley, I knew it. I could feel it.
I was like a zombie with no real feelings, no real emotions. I was just a shell going through the motions. For the next few hours, we called everyone to come visit her and say their goodbyes. My heart was breaking over and over as everyone exited her room, sobbing. She had more visitors and created a stir in the hospital that was only fitting for Kinsley. On February 14th, my husband and I stood in front of the PICU with our family watching us, holding hands, my head leaning on his shoulder, and tears in our eyes. As we walked through those doors, we knew we were walking out without our baby girl.
I climbed in bed with her, hugged her, held her hand, and cried. My husband stood over her, held her other hand, rubbed her head, and kissed her face as all the noise of the machines stopped and her heart slowly stopped beating. At 3:10 p.m. on Valentine’s Day, we lost our forever Valentine, Kinsley Reese Sandvik.”