And Then He Got Worse

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 started to change. 

Our Nurse Practitioner, Courtney started him on antibiotics and later steroids to help him get better. She said in 24-48 hours the medicine would kick in and we would know if it worked or not. We set Keven up in my room with oxygen, a monitor, his feeding pump, and a nebulizer for regular treatments. Just like that my bedroom was transformed into a hospital room. 

24 hours came and went. The drugs apparently hadn’t started to kick in yet. There was no change.

By 48 hours instead of getting better, Keven couldn’t even tolerate not having oxygen long enough to get the breathing treatments. The drugs were not working. 

The fear I had lived with for the last 5 1/2 months was coming true. We didn’t know how long we would have him, but we knew Keven had started his final decline. 

9/29/2016

Keven is sick, really sick and we aren’t sure he will make it through. I’m confused. Why has he made so much progress to die now? Why didn’t he just die when he was sick before? I’m sad. I hate seeing him like this. I hate the idea of not being able to hold and cuddle him. I’m sad we’re losing all the progress of the last several months. Sleepless nights, time missed out from other children, exhaustion-what was it all for? I just want to hold Keven and never let him go. Ever since we could tell that unless a miracle takes place his time is almost up I have prayed that I would be holding him as he took his last breath. Every time I put him down I worry that he’ll die not feeling loved. Every time I leave his side, I worry that I won’t see him alive again. I hate watching him go through this. I hate that there isn’t more we can do. I hate that he never knew his forever family. I hate that we don’t have a hospital that can do tests to help us know how/if we can help him more. I hate that I don’t know the timeline-how many days are left. I’m trying to see God in this, but it’s hard. I want to. I know he loves Keven more than I do and I imagine Keven’s suffering makes him sad. I just know there is a purpose for his life and for the timing of this - I’m just having a really hard time placing it. I need you God in all of this. Please draw near to me even when I’m having a hard time drawing near to you. 

That was a terrible week. I left my room as little as possible and held Keven as often as humanly possible. He slept on his mattress on my floor and I laid out couch cushions right next to it so I could easily check on him. 

For seven days we lived like this. Listening to the beeping of machines, wondering how many more days we had left together, filling the time with TV shows and worship music, enjoying endless cuddles.

But Keven surprised us. He pulled through and after seven days he weaned himself off of oxygen. We were all amazed—In true Keven fashion, he was operating on his own timeline.

Check out the next blog in this series The Celebration  

*Children of the Promise has given explicit permission for the posting of photos on this site. Photos taken of children in the care of Children of the Promise are not to be posted publicly without explicit permission given by Children of the Promise.