Port

Cute little story...

Since September (when Grayson's port healed well enuf to the point he was able to have it touched without pain) he has named it. It started out one night in Sept. when he was lying in our bed playing with his shirt. His hands were rubbing his belly and chest and all of a sudden he stopped at his port and froze. He looked at me and asked, "Mommy, this?" I said, "It's your port". "Port?" he wondered. I told him "It's to fix your blood. Make it all better". His hands kept wandering around his chest and he found the top of his catheter near his collar bone. As soon as I saw him stop there and rub it I began to struggle with what to call that. He can feel a bump there. I settled on "your dot".

So, weeks following whenever he is just chilling he will randomly pat his port and tell me with pride "Mommy, my port/my dot". He really sees it as a part of him. Another body part. Kinda like he knows its a good thing for it to be there. It is so cute to hear him say 'port'. That's how I have always seen it. The tool that is saving him. I admire it and him. It truly is an amazing medical tool for such a grand job to be accomplished.

Well, two weeks ago we were lying in bed together getting ready for a nap. G was talking on his toy cell phone while lying down and it slid off his ear. It landed on his chest onto his port. I hear him say the following:

"Uh oh! Sorry, Port. You otay (okay)? Otay Port. You Otay! Mommy, Port otay!" as he patted it like he was comforting it.

I told nurse Jenny the story at our next treatment and she laughed. It is too adorable and grown up of him how he has taken ownership of his port. They arent kidding when they say how resilient kids are!

Then this past Monday I was prepping G before taking T to school. Before every chemo treatment I have to place magic cream (numbing cream) on his port and then (if necessary)additionally (depending on the procedures of the day) on his leg/thigh for a PEG shot or on his spine for a spinal administration of chemo drugs or tap of spinal fluid. And because bruises and scars or scabs take so long to heal bc he is slow to clot I can always find the right lumbar area on his spine to apply the magic cream. It needs to be on him for at least 30 min, the longer the better tho. I rub the cream on the area and then apply a square piece of Glad Press n Seal over the spot. That is great stuff and doesnt hurt to remove. Well, that Monday Grayson only needed it on his port. I finished that up and put his shirt back on. He doesnt cry over this kind of stuff anymore. He actually wants to help. As I was about to put away the Press and Seal he started screaming and crying. I asked what was wrong and he told me "leg, leg!" He insisted he needed magic cream and "paper" on his leg. I tried to tell him he didnt need it today but he would not calm down. He changed his story to his back. He lied on his stomach and screamed for me to take his pants off in order to put cream on his back. I tried to tell him that wasnt happening that day either. No use! He would not calm down. Finally I gave him a piece of Press and Seal and let him figure it out. I hid the magic cream and he had no idea it was an element missing since he had the "paper"to distract him. Wanna know what he did w that "paper"? He placed it on his leg with such precision. When he was done and patted it down, looked at me and said, "There. Better. Jenny better". He remembered it is Nurse Jenny that takes it off and preps all areas. He really does adore her!

Here is my guy taking ownership once again. Its' this fine line between being proud of him for recognizing what needs to be done for him, recognizing routine and being sad for him for doing things/knowing things that no 2 yr old should have to. And I'll have you know that he couldn't wait to show Jenny his leg once we got to clinic. She smiled so proudly. I knew in that smile she understood my struggle of recognition in his little chore he took on that morning. And something tells me there will be more of his take charge attitude to come! Just like when we are admitted into the hospital for transfusions or see Belmonte or when Jenny accesses his port each week-he tells them what order to do things in. He tells them- "Check ears (take temp)...time squeezes leg now (blood pressure cuff)...Buzz light (heart monitor on his toe that lights up red)...time for numbers (check his weight)...I drink it (take his oral meds)...I push (push the non-toxic syringes for blood work or flushing of port)...I hold red, purple (he knows what order to insert the tubes to collect the blood from his port and Jenny actually lets him bc he counts and waits long enuf for them to fill)...and so much more. He is a mini doctor. He loves to help and wants to be in control when possible. I dont blame him. It gives him comfort and I applaude him for that. I'll say it again-------he is truly amazing!