Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more…
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.
“He leads me beside still waters. He restores my soul.” Psalm 23:2b
Moment by moment.
I am thankful for your updates and pray each time I see one (on facebook or on the blog). Trusting our Father will continue to sustain you and comfort you.
Love to you from another sister in Christ,
Vanessa
Oh man. You just want to run away with him from all that prodding and procedure and fear. It’s crazy that all of this is what is saving his life. Strength to you, sweet mamma, and may you both be gifted with many moments of peace and fewer moments of chaos.
Praying
Praying
Dear Sweet Ellie, Bob & Chase, My heart & prayers are with you. I know Jesus is with your little man. I so seldom look at facebook, I am sorry to be just learning of this situation. I am heartsick that you are going through these dark times. I will be in prayer for you from now on. I wish I had words for what is in my heart. I love you. In Christ, Jody Patchman
Oh Dear God please protect this poor baby from pain and damage to his sweet little body…please be with him and his parents and help them cope and find the peace that they need to get through this time. In Jesus Name, Amen
Thinking of you and of Chase always and prayers continuing always….
how long has it taken me to somewhat know where the “still waters” are. they are, of course, within us to utilize when the most horrible of conditions exist. To focus on the still waters, not the evil of cancer, is the most difficult. Having a son sick for 52 years, I have finally, turned him over, and rest in the still water. You are Chases’ connection to Him. so hard, so overwhelming. He wants you both. I pray daily moment by moment. I want an instant healing for Chase. I will continue to ask for that.
Praying for this little man. My heart aches hearing about the port and the constant poking. No fun at all!