Life With Steven: Lundi Gras

Arm span measurements

Life in Memphis usually starts early for us and Monday was no exception.

Ongoing construction of the new Chili's Care center

We got up at 4:00 am California time for a fasting blood draw.

Since Steven is so fearful of needles in general and IV's in particular (flashback to one experience of 6 people holding him down while he screamed at the top of his lungs), the endocrine clinic offered to insert the IV and draw their labs from it so he'd only be poked once.

For four years, only the neuro-oncology nurse Miss Leslie has put in his IV's, but we arrived to find that Miss Leslie now works elsewhere at St. Jude.

Insertion of the ill-fated IV

So endocrine tried, but things went badly, the IV tube wasn't in far enough and they kinked the tubing trying to work it in further and it wouldn't flow.

They managed laboriously to draw the labs through the kinked tubing and sent us away with the malfunctioning IV still inserted because Steven was becoming hysterical, but it was pretty clear it wasn't going to work.

We continued with his endocrine visit. Steven has grown almost an inch since August, but this is greatly slowed down from his growth of last year. He's almost 5'2" now and he's on the down side of his adolescent growth spurt.

Walkway between the hospital and the new Care Center

Steven was supposed to have a bone age test done (x-ray of his left hand), but we couldn't do it with the IV in.

I knew the IV wasn't going to function and I didn't want them to find out at the last minute when they were taking him in for the MRI, so I went over to the neuro-oncology clinic to have his IV removed.

Steven playing Backyard Baseball in E Clinic

For over a year, Steven has managed to get his IV's in and out without tears, but he cried when they put the bad IV in, and he was sobbing and drenched with clammy sweat as they took the bad IV out.

We got them to give us Elomax (a numbing creme) for the second IV

Steven helping Miss Mary remove the Elomax tape in preparation for IV #2

When we got to the MRI, one of the nurses came over to put in his IV a second time. We'd pre-numbed four locations with Elomax, Steven was shaking from head to toe at the prospect of a second IV.

Steven after Miss Mary's successful IV

I think the MRI nurse was as nervous as Steven as she prepared to stick him, but Miss Mary gets a gold star, she got it in first time and it flowed well.

Preparing for the MRI before they screwed on the maskz

Then the same old routine, Steven lies on the table, they put padding under his knees, his neck and head are padded with foam, they tape his forehead looking straight up, last they screw a mask over his face and slide him into the tube and the loud noises begin.

The Chili's sign was up when we left the hospital

Thank God he's not claustrophobic, I am and I know I wouldn't tolerate being inside that little tube with a mask over my face for over an hour as well as he does.

I took him out to Corky's afterward for some of that delicious Memphis barbeque.

The St. Jude pavilion