Tag Archives: Port-a-cath

Pembe Bear

12 Mar

Tonight Ladybug helped me pack her very special hospital bag.  The bag was filled with necessities like diapers, wipes, pj’s, and a cuddly blanket. There was one more item in this bag that is by far the most important – it is a very special little bear known in our house as Pembe Bear.  Now Pembe bear has been with Ladybug since she was first-born, it is always by her side during each and every hospital stay, and even has its own medical bracelet to match Ladybugs.

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Just in case you were wondering, Pembe is Pink in Turkish.  It was one of the first words I picked up when I lived in Turkey, well that and Otur which means sit down.  As a kindergarten teacher this came in very handy with a class full of 4/5 year olds.

Back to Pembe Bear – PB has never missed a hospital stay or surgery and tomorrow Ladybug is scheduled for surgery.  Her PEG G-Tube will be replaced with a “big girl” Mic-Key G-Tube, and if all goes well and they are able to find a good line Ladybugs Port-a-Cath will be removed completely. If they aren’t able to find a good line there is a chance a new port-a-cath will be put in its place. I’m obviously hoping for the first.

I will be sure to post updates after the surgery.

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Feeding Tube Awareness Week

9 Feb

This coming week which is February 10-16th, 2013 is

FEEDING TUBE AWARENESS WEEK!

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Feeding Tube Awareness Week was first launched in February 2011 By the Feeding Tube Awareness Foundation.

Each year the week focuses on a few topic areas designed to give parents, caregivers and tube feeders the opportunity to share their experiences with tube feeding with friends and family through social networking sites, blogs, viral and traditional media. Increasingly, parents and siblings have been using Awareness Week to give presentations in their children’s classrooms.

Long before the CDG diagnosis came to light, Ladybug was diagnosed with failure to thrive. Failure to thrive (FTT) is a term given to infants and children who do not meet the growth rate that his or her peers meet. Yes, it is a bit of a generic description but one that we dealt with for quite a while. Basically Ladybug was showing signs of severe reflux or GERD(Gastroesophageal Reflux Disease), and was refusing to eat anything. It was at 1.5 months that Ladybugs first feeding tube was put in.  The lovely NG Tube (Naso Gastric) This tube runs directly from the nose to the stomach.

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What started as a quick fix to help her gain some weight became an everyday part of our lives.  The NG tube truly was a lifesaver for Ladybug, and for the first few months she didn’t bother with it.  That is until she learned it only took a split second to pull it out. It didn’t matter how we taped it, what type of tape we used, or even how much tape we used, those teeny tiny fingers always managed to pull that tube out. After numerous trips to the ER to have the tube put back in, we began to discuss with the doctors about a G-Tube.  The G-Tube (Gastric Tube) is surgically placed into the stomach. Seeing as Ladybug still wasn’t eating orally and was beginning to throw up often it was the obvious next step.

The G-Tube was inserted in October 2010. Ironically this occurred the same month she had a GI bleed, bowel resection, port insertion and the CDG diagnosis.  October 2010 was a very emotional month to say the least.

Even though Ladybug is slowly starting to try food orally, sippy cup with water, Breton Crackers, squash and chocolate, the G-Tube is her sole source of nutrition. Thanks to the G-Tube and an amazing dietician, she is also steadily gaining weight according to her very own growth curve. The other great thing about Ladybug being a “Tubie” is that her best friend has one as well.  “Bean” the other Diva of 3C at Mac Kids is always excited to see Ladybug and compare their identical feeding tube clamps.

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Another tubie mom couldn’t have said it better when she posted that she would rather questions about our kiddies tubes than stares.  I truly LOVE when little kids look at Ladybugs feeding tube attached to a little backpack inquisitively.  I can only imagine what their honest minds are thinking.  I always give them a smile if only to let them know it’s ok to be curious.  The teacher in me can’t wait for a chance to explain what it is not only to the kids but also the parents.  If I can pass on anything it’s for adults to remember the inquisitive little child within. Don’t ever be afraid to ask questions – the majority of people are more than happy to answer them.

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A Million Sprinkles

9 Jun

Yesterday began as every 1st Friday of the month does. We packed up all our gear and headed to the local children’s hospital for blood work and to get Ladybugs port flushed with Heparin.  The Heparin stops her blood from clotting in the line.

When we arrived and were brought into the room there was something different about my little princess.  Typically, Ladybug is all smiles during these visits. She loves kicking her feet to hear the crinkle sounds on the paper that covers the bed, and is usually quite calm as they prep and access her port.  Today she wouldn’t let go of my hand. As I put the mask on my face to protect her from germs her eyes began to slowly fill with tears.  As soon as the nurse cleaned the site with the alcohol swab her lower lip started to quiver and the alligator tears began to flow.

Up until this very moment our little Ladybug never really understood the things that were happening to her.  I guess we were lucky considering some of her medical issues would have brought many a grown up to tears in pain.

My sweet baby girl was looking up, pleading with her eyes for me to make it all stop and hold her.  All I could do was hold her hand and  put my head next to hers on that crinkly paper.  I was thinking in that moment – how nice it would be if she could eat ice cream.  Then I would go out after this was over and buy her the biggest scoop with all the toppings she wanted for being such a brave little girl.

After we were all done I picked Ladybug up and held her tightly in my arms.  By the time we had reached the car all was well with the world and the tears (both hers &  mine) had disappeared. It was in that moment that I came to realize love is the most important thing my little Ladybug will ever want for.  No amount of ice cream cones with a million sprinkles, video games, and toys can or will ever compare to the love and attention we give our children.

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