Pretty quiet here in Taylorville. We're still a bit in shock that we don't have to scurry off to radiation every morning - but we're getting used to it. Now that James can relax and eat a breakfast in the morning we're trying to get back in some sort of routine before the first day of first grade this Thursday.
This past Friday the school nurse came by the house and we had a wonderful chat about what James has gone through and what his anticipated needs will be for the school year. Just this evening we all went over to Hall School to meet JT's teacher, Mrs. Dowdy, and to see the classroom. James went this evening worried about, of all things, first grade homework. He was assured by Mrs. Dowdy that she'd take it easy on them and not to worry. All in all, JT walked out of the school pretty excited about the school year. Tomorrow Jenn and I will meet with the principal, nurse and teacher for one final chat before he climbs back aboard Marsha's #43 at 8:08am Thursday.
Some have asked about JT's IV infusion pump so I thought I'd give you the skinny on that thingy. JT just started week four of a four week infusion of Nafcillin. He gets this infusion via a little pump that he carries around in a little shoulder sling. It is affectionately known as his Robot (sorry to repeat pics here...)
Anyhow...this little bugger fires off (medical term there) a dose of meds over the course of an hour every six hours. Pretty nifty little thing. But I'll be happy when we have to give it back. Or maybe I could sell it...I see there's one on eBay for $900.....
Another downside of not going to radiation is that JT's huber needle changes can't be done while he's under anesthesia. Oh, joy. Today was JT's first needle change by the visiting nurse. I'll be honest, I think that I had as much (if not more) anxiety as James about doing this. The nurse arrived at 11am and within just a few minutes had the old dressing off and the needle out. James was amazingly cool during this process given that when it comes to taking any dressing off in his port area he's very - I mean very - protective. And, frankly, I don't blame him. Who in their right mind would want a 6 by 6 inch adhesive pulled off their upper chest. I then applied the numbing Emla cream and Glad Press 'n Seal Wrap. Yes, readers Glad Press 'n Seal is not only good to preserve your Labor Day BBQ leftovers, it's recommended for use in keeping numbing cream in its rightful place.
After about an hour the nurse returned and it was...cue the music....needle time. I had all the supplies lined up and ready to go. Had we been able to just stick the needle in I think we'd have been golden. JT was watching Star Wars - Return of the Jedi and was zoned right out... But there was one hitch...his port area needed to be cleaned of Emla and then scrubbed with a sterilizing agent for, get this, a minute. James' anxiety festered, grew and reared its ugly head at about the 45th second. The poor bugger broke down and began a full -on tantrum. Luckily, the nurse was good enough to see that her window of opportunity was rapidly closing and wasted no time in putting the needle in as fast as she could. With the needle in JT's port, he finally began to calm down.
Then....the needle didn't work. Seems that during the tantrum's movement the needle missed its mark. Now mind you, I'd basically sold what little soul I have left for this to go smoothly. And in this brief moment (that seemed to last forever) it wasn't going very smooth at all. As I turned to get another needle out of the CVS that is my dining room hutch - convinced that we'd have to stick the guy again - the nurse called out "it's good!" Seems that after JT made some more movement the needle settled in and we got a good blood return. Frankly, it's not the best stick I've seen. It has a little list to port (no pun intended). But, three things - he was having a tantrum not sedated, I couldn't do better and it works. So, I'll just shut up.
After few quiet moments, tissues, hugs and kisses and the nurse left, Darth Vadar had been beaten and all was back to being cool in JT's world.
We hope that you all had a great Labor Day weekend. Thanks and be safe out there. I'll try to check in in the next few days....
Love to you all,
dct
P.S. Lauren...Keep up the good fight. JT's pullin' for ya. It's not a sprint...it's a marathon. And it's okay to grab some water from the folks handing it out. Best of luck...
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