So along with his sixth intrathecal idursulfase dose, Case also got his medical tattoo today – the word INTRATHECAL in block letters above his intrathecal port-a-cath. We have been exploring this since Case entered the clinical trial and felt this was necessary given the fact that he now has a port on each side of his lower chest and putting anything not specifically formulated for intrathecal (into the spinal fluid) administration into this port would likely damage his brain or kill him. If this medicine continues, it is likely that he will continue to live with these two ports for quite a long time and as time passes, one might not be as specifically vigilant given that his intravenous port is being accessed every week. Thus, the danger of mistaking which port to access.
We didn’t realize that it would cause such a stir among the doctors and nurses here, but we now understand that Case is the youngest plastics/tattoo patient for this plastic surgeon and maybe at the hospital at all. I thought we’d have a little fun with this, in the vein of “if you don’t laugh, you’ll cry”….
Top 10 Reasons why our MPS kiddo needed a medical tattoo:
10. Case just wasn’t unique enough (yeah, right!).
9. So he can brag to his preschool friends about how hip he is.
8. He just needed a few more scars…
7. We thought we could help the hospital get it’s own tattoo show – UNC Ink, here we come!
6. He wanted to test the doctor’s spelling skills.
5. He wanted to hold the record for the longest word in a tattoo (of course, he could have really won with “mucopolysaccharidosis”)
4. So he could fit in with the 4-year-old leather and tricycle crowd.
3. So Case can cheat on his spelling test when “intrathecal” is on the list.
2. He just wanted to match Barney.
The number one reason why our Case needed a medical tattoo:
Because you just can’t be too careful when your sweet boy has a port with direct access to his brain. Sorry, nothing funny about that one.
Here’s a shot of Case’s new body art – not stylistically beautiful, if you are into tattoos, but it does what it is supposed to do, make someone STOP and realize this is an intrathecal port – nice and large so no one misses it….