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The Magic Button

February 10, 2009

The port how it looks after surgery

The port how it looks after surgery

Yesterday, Isa received her Magic Button from the surgeons.

My day was busy before I even got to the hospital, with breakfast for G. (If that is what you call two bowls of Honey Nut Cheerios.) Then a stop at a drive-thru coffee place for me. Off to Georgetown Market to get food for all of us. The unfortunate part of shopping for food, is that I have a FULLY stocked refrigerator at home. But I ran around furiously trying to find things which could be classified into a Neutropenic diet.  No fresh fruit or vegetables. 

Yes, I said, no fresh fruit or vegetables. For those whose Neutrophils are less than a 1000, the bacteria that occurs on the fruit skins could possibly cause an infection in the patient. Therefore, we consider those foods contraband. Never before Wednesday would I feel subversive eating a navel, orange that is,  there have been a few subversive navel eatings before… The only good thing about this restriction is that it triggers an ODD response, in me. >>>>> Me must eat fruit. Must eat carrots.

Surprisingly we , G & I arrived just before Isa was to leave for surgery. The transport staff came to get Isa with a red wagon.  https://isarose.wordpress.com/2009/01/16/the-wagons/

With the blue suited woman pulling the wagon, Papa & G walking in front, I followed behind watching as Isa snuggled down. As I looked down at wagon number 651, I read the plaque attached to it. “In honor of Caden Gidience”  I choked backed tears, wondering whether he made it out of Riley alive, or if as I read his name, I called his spirit to walk with us to surgery.

Luckily, each step of the way, we are only presented with a tiny portion of information, and the ubiquitous consent forms. The anesthesiologist came to discuss the medications and the process a little bit more. Then a fat, short-haired nurse with a broken right hand and the largest pen I have ever seen, came with some medicine. She didn’t tell me it tasted bad. So Papa had to take over getting it into her system. I sort of flubbed it. 

During her time in the red wagon, G was jumping up and down and wiggly. We have a rule, that when anyone in a coat or blue suit is around, she may not interrupt. (Is jumping interrupting?)

After the loopy medicine began to take effect, the peach clad toddler sang, “mommy and papa, and eeeeeeee ssssss aaaaaaa” as well as one of Papa’s favorite songs. “Everything is stinky, Everything smells real bad,” which debuted during the time period where Papa and I began to smell again–after we quit smoking a pack of Blue American Spirits a day over 5 years ago.

I smiled.

Then Molly, RN came to take Isa to surgery. She pulled the engine as we followed, with me as caboose. Each kiss feels like the last.

Even though Isa experienced the first major surgery of her life, having her attended by others, gave me, Papa & G a little ‘lighter’ time together. As we left the cafeteria, we saw a teen boy in a wheelchair, obviously the patient,  sitting next to him, a woman with long, frizzy red hair. Snippets of conversations float in the air around us, as we walked through theirs, we overheard.

 

BOY: I don’t feel good.

MOM: (scratchy smoker voice) I don’t ever feel good, but you never seem to care.

For those of you familiar with a Hoosier accent, you got the whole picture. Luckily we were a hair from the glass elevator so I could actually laugh out loud.  Funny!  

 

During this administrative time where we made phone calls and had a visit from a familial angel, G watched Diego…. DDDDDiiiiiieeeeego, Al rescate! 

After returning to the room, my tiny little creature’s magic button disturbed me. The damn thing sticks out from her body a full inch, and the bandage covering the port is clear, showing the clotted blood beneath. I failed to notice how much was there, and worried later that the red ooze was expanding. The port will ultimately be under the skin, and with a tiny poke she will receive future infusions through this Magic Button. BUT while we are here at the beginning of the “INDUCTION PERIOD” she will continue to have this large protruding mass just medial to her left nipple. The port, has a tube that descends interiorly to the Subclavian vein. The best place to deliver the life-saving toxicity better known as Chemo.

 

The side effect of the medication had Isa barking orders like a damn drill sergeant. Sometimes she failed to use words, simply pointing and grunting. But  true, to form, I cannot relinquish as her papa can, I said  “Isa, just because you’re sick doesn’t mean you have to rude.”

The magic button has now a tube snaking out to a bag of fluid containing Dextrose, Sodium Chloride, and Sodium bicarbonate to nourish, and to reduce the amount of uric acid in her blood. Uric acid is a by-product of the cell death. Also high levels of uric acid can cause pain. 

The hardest part, is remembering to be careful as I pick her up to carry her to potty. As most parents have felt at some point or other, that rush of adrenalin as you hear your child scream from  pain.

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2 Comments leave one →
  1. Kelly permalink
    January 19, 2009 11:57 am

    Hey, I can’t believe you went to the Georgetown Market. The man who owns the market’s son and ex-wife were at Lifebook with us. His daughter is also a chiropractor. There are no coincidences.

  2. Jessi Jade permalink
    January 17, 2009 6:09 pm

    Momuch sent me this link to keep up to date with Isa’s progress. Just wanted to let you know that your family in Kentucky is praying for all of you and Isa consumes our thoughts every minute of every day. I just learned how to care for the mediports in school Thursday and am so glad that she was able to recieve this implant because it really is the best way to give a child chemo with the least amount of pain from those needle sticks. Thank you for taking the time to keep us informed and always know that whatever you need, we will help you any way possible. I miss you and cant wait to meet both your beautiful daughters….

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