Ups and Downs…..

This past weekend JT got to enjoy nearly 36 hours without his medi-port being accessed. Or better put, no tubes attached! I would say that for the most part JT’s weekend was pretty okay. Saturday was probably longer than he’d have liked (we all went to Sanford for Jenn’s grandmother’s funeral) but he was able to play, take a bath and joke around without the worry of hitting his access point. All in all he laughed a bit, cried a bit (because of me I’m sure) and got to be a six for a bit.

Now, a word about JT’s bath on Sunday. Many of you are aware that JT is in the process of losing his hair and of our subsequent decision to shave his head. Well, it’d be naïve of us to think that just because we shaved JT’s head that all the little stubble wouldn’t fall out. I just didn’t expect that when Jenn gave the bugger a bath- and washed his scalp - the stubble would all rub out! And that folks..is what happened. He went in the tub stubbly and came out Mr. Clean. (Except for a small patch at the base of his skull – now, I just want to save that part!)

Monday began JT’s fourth week of radiation. For JT, his week begins by getting his medi-port accessed. Mind you this is a process that would, most likely, un-nerve some of us adults…let alone a six year-old. Regardless of all the numbing Emla cream you put on the access point, the nurse still has to stick a one inch needle into JT’s medi-port by his collar-bone, and JT doesn’t like it. One bit.

On this morning, with his anxiety running sky high, the decision was made to give JT some Versed to try and ease his worried mind. This drug is designed to make him a wee-bit loopy so that the nurse can access him with less “resistance”. The problem was that the Versed dose wasn’t quite enough and JT was still “with it” enough to express his…oh, how-do-you-say……displeasure. Then to add insult to injury he complained of his port hurting “underneath”. This prompted further action – Lidocaine shots around the port to ease any discomfort. So, in the end, the kid who didn’t want any pricks, owies or otherwise wound up with at least three and was mentally together enough to recall all of it. Poor guy. No one wants to be a pin cushion. But shit like this is going to happen. And no one’s to blame. We can only hope that there’s some time to heal before it happens again.

Monday night, after JT had lied down in bed and the Taylor house was quieting down JT slipped out of bed to talk with his mother. Apparently, lying in his bed he began to worry that in the morning he was - in some way, shape or form - going to have to relive another accessing. Despite reminding him of the fact that he was already accessed (he can look down and see his tube hanging off his shoulder)and he wouldn’t need accessing until next Monday, it was tough to talk the little guy off the ledge. Jennifer did a great job of easing JT’s worried mind by ensuring that the next Monday he’d be given more Versed and that he wouldn’t (fingers crossed) have another morning like he’d just had. After some hugs and kisses JT went off to bed (hopefully) with the peace of mind that he’s have an uneventful week.

Jump to Wednesday.

In RadCU this morning the nurse went to flush JT’s port in preparation for the morning’s procedures. After a brief moment she met resistance in the line and mentioned that she’d have to re-access him. Something wasn’t working properly in the needle. My stomach sank. Say it ain’t so! Not 36 hours earlier Jennifer and I had, basically, wagered our lives that JT didn’t have to see another needle for a week! “Can we get Versed, and a lot of it?”, I asked. After some nurse/doctor discussions the decision was made to de-access him and apply numbing cream. All the while, JT can hear most of this and is becoming increasingly nervous. Luckily, just before taking the needle out the nurse attempted to flush JT one more time. Bingo. Blood return (don’t worry that’s a good thing)! The medi-port and needle work and we were back in business! Needless to say, we’ll be crossing our fingers tomorrow and Friday in hopes that the needle does what it’s supposed to and Jenn and I get to keep our word to the kid…..

Take care out there…
dct