Of Donuts and Tacos…

On several occasions, I’ve referenced Chase’s central line, his weekly labs and his dressing changes, but today, I’ll be a little more specific.  This morning, we took pictures of Chase’s dressing change.  The hope is that he could see what’s happening from a different perspective and that it would help him overcome his anxiety.

I need to preface these images by saying that it is necessary to hold Chase down with very little mercy for his own protection.  Despite months of talking, processing, and role playing, he becomes protectively enraged, and rightfully so, when anybody even gets close to his line and he must be still for a successful change.  When the dressing is off, one can’t even breath in the direction of the line without risking contamination…hence the nurse’s mask and our heads turned away from the uncovered site.

As I debated whether posting these pictures serves a helpful, edifying purpose, I decided to write this piece and use the pictures because this is part of our every week and even if you must look away (and I wouldn’t blame you if you did!), I hope it will encourage you how to pray for Chase (and his family) in more specific ways.

Stripping off the old bandage

Stripping off the old bandage

After being restrained on a flat surface by no less than two people (but preferably three…or four), Chase’s old bandage is stripped off.  This is without question the most tedious and the longest part of the entire procedure.  This is an area that we hope and pray tubes in his ears will improve.  When he’s screaming at the top of his lungs, he is unable to hear our assuring, calming words in what I can only imagine is a complete nightmare for him.

The central line

The central line

Here is a great and close view of his central line – and his poor and chapped skin, raw from months of bandages and tape.  These moments after the bandage is stripped when the line is completely exposed (while being cleaned and dried) are some of the most scary to me.  He struggles the hardest at this time and I find myself thinking that it would take so very little for him to pull it out – risking infection and embolism.

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Laying the bio-patch

After the line site is cleaned and dried and the nurse changes her gloves (this is how seriously sterile the care is – the same gloves that strip and clean the old can’t lay the new), the re-dressing begins with this bio-patch: a medicated, padded piece that releases antibiotics to keep the line clear and safe.  Chase calls this his “donut” for obvious reasons.  In this picture, he was beautifully silent and calm for a breath.  More often than not, he screams “Band-aid! Band-aid!” as he knows that the last step of the change is the bandage and he desperately wants to be done.

All done!

All done!

And then the bandage and tape are on and it’s done!  It’s hard to explain the flood of relief as we sit him up, sobbing and laughing at the same time.  Another week without mishap…thank you, Lord.  The entire process takes less than 15 minutes or a couple decades…depending on which body part you’re restraining.

The "Taco"

The “Taco”

In our house, because it’s Chase, we reinforce the dressing with an ace wrap.  The wrap, his “taco” (because of how it wraps around him like a burrito), is never off except for dressing changes.  We learned this the hard way after losing a line in the Fall.

Five minutes later

Five minutes later…

And then it’s five minutes later and the fight is a distant memory.  He loves everybody again and he’s busy watching a Disney show on his iPad while Phyllis, his home healthcare nurse draws his labs.  And by the time she leaves, he says “Bye, Miss Phyllis! Thanks for changing my donut!”

In closing, holding him down and watching him fight against this simple facet of care each week is extremely intense to me, but I am always so encouraged that this, this is the level of fight he brings to the cancer battle.  Almost makes you feel sorry for any tumor willing to take him on, doesn’t it? :)

Moment by moment.

 

11 responses to “Of Donuts and Tacos…

  1. Oh Ellie…I just don’t even know what to say. Brave, brave, brave boy. And I find myself searching for just the right word to say about you and Bob…and for that matter your folks…Chase’s siblings…your nurses…your friends nearby who are standing with you…all I can think is my heart cry to the Lord on your behalf, “Lord, give them strength, and really, give them ALL they need to continue to walk down this road.” And of course my continual cry for healing. You’re all on my heart today.

    • Love you, dearest Connie! As you well know, He will (and DOES) give us exactly what we need when we need it. Whatever my God ordains is right…

  2. Hi Ellie, my name is Joanna and I have been following your blog since the beginning of Chase’s diagnosis. I want you to know that I pray for you, Chase, and your family. You are an incredible woman, mother, and being….you have shown strength and character throughout this experience. Your courage and faith has been an extraordinary example to me and to all those around you. I encourage you to stay strong and remember that you are not alone…there are people out there like me who have never met you yet are praying for you and little Chase to get through this difficult time. May God bless you and your family, your family is in my prayers.

  3. i’ve followed you since before chase’s diagnosis and my heart has always been heavy for your family and little chase. after spending this past week in the NICU for my days old son, my heart breaks even more for you in understanding how painful it is watching your child in agony over medical procedures and over the feeling that you are giving them a necessary poison that oddly enough will heal their little body. praying for you guys.

    • Thank you, Ashley! And we will pray for you. How is your son doing? …and how are you doing? Those hospital days are exhausting like no others.

  4. Russ Otto and Family

    Thanks again…and again, for sharing. What a journey in grace! Precious Savior, thank you for giving us all this family and their hearts for You, Lord!
    Chase is a real champ :-)

  5. Dear Ellie,
    May you and your family be strengthened, upheld, given grace, and even joy, as you go through each day. May the Father of all mercy fill you with His peace.
    Love,
    Val

  6. Hi Ellie,
    I stumbled upon your blog and read about Chase’s illness. I had googled images of pediatric central lines as part of some work for our family business. Anyway, we have a product: Pediatric Central Line Protector. I’d like to send you one for Chase. Could you advise on his chest size please and a shipping address. You can email me directly. Please visit our website and let me know if you think this would be of any comfort to Chase and use to you.
    Best wishes,
    Sarah

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