Tag Archives: Surgery

Looking For Still Waters

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.

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12.12.12

This was my favorite moment of Chase being born and Chase’s favorite picture of his birth because it shows that I too have had an IV in my hand

As I sit here contemplating 12/12/12 and the third birthday I have, at some moments, thought I wouldn’t see, I am overcome and don’t feel like I can adequately summarize this moment in Chase’s life, so here is what I would (and probably will) say to him:

My Dearest Chase,
Today you are three years old and even if you aren’t cognizant of it, this is a big deal.  Your Daddy and I have often wondered if you would live to see this day – and that was even before your “baseball“.  Since your “baseball” and your “cancers“, there have been many more minutes that we have stood by your bed or talked with your doctors and wondered if we would get to celebrate this day with you.  …and here you are!  Not only with us, but finishing all your brave days in your “spaceship“.  As we often whisper in your ear before you take your nap with the doctor: “Be strong and of good courage, for the Lord your God is with you.” (Joshua 1:9)
Son, Daddy and I are so proud of you.  You’re our favorite, bravest Chasey Bear in the whole world!
Love,
Mommy

Happy 3rd Birthday, My Precious Chase!

Joy comes in the morning… (I have much more recent pictures, but this is my favorite – that first smile post-surgery is a perfect summary to this little one’s year)

[Chase’s dictionary of terms: “baseball” = the tumor site (with it’s baseball-like stitching), “spaceship” = the proton radiation room]

Nuts and Bolts

Thursday morning, from the surgery floor

I just passed my nearly unconscious son into the arms of the medical team. Have I ever mentioned that this is my least favorite part of procedure days? They give Chase a small drug to relieve “separation anxiety” before they take him back to the OR and he immediately relaxes, but I still hate watching them wheel him away from me. I just do.

After almost two weeks, Chase is back in the hospital today. Right now, he is in the OR to get a new central line, remove the picc line in his arm, get a spinal tap, and receive his spinal chemo. After post-op recovery, he will be admitted for about four days of chemo infusions.

Many times, my thoughts and prayers are more general in nature, but today I have a couple specific requests: Please pray that this new central line does not infect (as his first one did) and please pray that the cancer is no longer present in his spinal fluid.

Thank you.

Hoping and believing outside the OR room…

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