Tori's Stories

If you missed the previous post click The End There are nights when I still hear the constant beeping of machines. Sometimes I turn over in my bed and expect to be able to look down and see Keven next to me. If there is a noise outside my window, I often instinctively want to jump out of bed and check on Keven and make sure he is okay. It takes me a moment to calm down and remind myself that he is not here.  Occasionally when I hear something beep my heart rate rises and it takes a moment for me to realize I do not have to jump into action. I have to calm down and tell myself that this noise is not my responsibility.  If beeping alarms go off and they don’t get turned off right away I can’t focus on anything other than that. It’s a constant internal struggle between the feeling of needing to do something and telling myself that everything is fine, nothing needs to be done.  I have developed an ear for the feeding pump. I can hear it’s beeping from a...

To read the previous post click The Celebration When Keven’s feeding machine went off at 4am on December 10, 2016, I turned over, put my glasses on, flipped on the light and saw him. He was leaning over in his chair, with his head resting on the side of my bed. As fast as I could move at that hour of the morning I kneeled down in front of him and pushed his limp body back straight.  He was already a little cold. He was already a little hard to move. I wasn’t ready. Not yet. I put my hand on his chest, willing movement. I held his wrists, his ankles, anything to feel a pulse. Nothing. There was no denying it anymore.    I played this moment over and over in my mind so many times in the months prior to it actually happening. None of them were like this moment. No matter how you prepare for it, you are never ready. I called Courtney (our nurse). “I think he did it.” (imagine getting that as a wake up call at 4am, sorry Courtney) “Did what?” “I think he died.”...

If you missed the previous post click And Then He Got Worse It was almost surreal. I found myself stopping and staring at Keven multiple times throughout the day making sure that this was real life. He was still with us. It truly was a miracle. We were so blessed to still have Keven with us.  Just a week after we thought we were going to lose him, we instead got to celebrate Keven’s 4th Birthday. It had to be huge. I was waiting on a Paw Patrol feeding pump backpack to come in the mail for him, so I decided to use that as his theme. One of our stateside staff was coming down the day before his birthday so I had things shipped to her house so she could bring them down with her. Scooby Snacks, Cocoa Pebbles, decorations, Paw Patrol party hats, and new Paw Patrol books. Here, I made puppy chow from corn flakes, a giant dog bone shaped cornflake rice crispy treat, and gathered up all of the shaving cream I had. It was going to be big. On the day of the party we decor...

If you missed the previous post, click Home from the Hospital On September 25th, Keven’s breathing got “weird”. It wasn’t the first time in this sickness—I had made several trips in the middle of the night to the exam room to borrow a pulse ox to check if his oxygen was still good. But somehow this was different. I had been concerned about him all morning and the nurse had even checked him out. He wasn’t amazing, but he was okay. I was in a meeting and a nanny brought him over to where we were, near the exam room. His breathing had gotten worse. His oxygen stats were not great so we gave him oxygen and a couple of nebulizer treatments. At first we thought a little bit of oxygen would be fine and he would be okay, but each time we tried to take the oxygen off it didn’t take long for that labored breathing to come back.  He must’ve had pneumonia again. Each time Keven threw up, there was concern that he inhaled some of it into his lungs. He threw up just before his breathing ...

If you missed the previous blog, click Just a Fever 5/19/2016 Keven came home from the hospital today. I was really excited—until we got home and he threw up everything we gave him and got a fever. Basically it seems like he is back in the same position as he was before he went to Milot. I just wish he’d get better. He’s staying in my room for now—I’ll get up in the night to check on him and try to get more fluids/mamba in him. He needs more than he is getting, but right now I’m stopping as soon as he starts gagging. I want so much to be successful - for him to get better and gain weight. God, I’m going to need your help to get through this. I’m going to need you to be my rest and my strength. I’m going to need you to help me be who Keven needs and who the rest of the kids need me to be. It’s hard, but I want to do it for them. God, the quicker you heal Keven the better, please?  For the next month my journal entries repeat the same theme.  “I’m exhausted.” “...

If you missed the first in the series check it out here “It’s just a fever, no big deal.”  “Throwing up isn’t uncommon for him, he’ll be okay.” These were my original thoughts back in April 2016.  Little did I know that this was just the beginning of what would eventually change my life.  Twelve days after the fevers started and the vomiting got worse, Keven was getting really dehydrated. We couldn’t pinpoint a reason for any of this as all of his labs came back normal so we took him to our local hospital. Instantly the nurses could tell that this was a very sick little boy. It took three nurses to get an IV in his arm so that the IV fluids could begin to flow through his veins and rehydrate him. He barely cared about all the pokes while I cringed each time.   With a house full of children and teaching responsibilities I couldn’t stay at the hospital for an unknown amount of time with him. We had a trusted nanny stay with him and I went to v...