Intrathecal Trial Update – Of Ports and Prayers

Posted Wednesday February 01, 2012 by Melissa

Intrathecal tattoo

We are in North Carolina on the tail end of our visit for IT dose #15. The dose was successful, meaning they were able to access the port, draw off spinal fluid, and administer the dose of intrathecal idursulfase.


IT port

Intrathecal port-a-cath (intact)

Case was extremely jumpy during the dosing. He got an even higher dose of Versed (a sedative) that he got last time, but he was more awake. I couldn’t determine any other variable that would make him more jumpy today. Sometimes kids are just quirky. So, it made accessing the port quite difficult. It had to be accessed twice, which didn’t make it any more fun for Case either, I’m sure.

Getting the cerebrospinal fluid to draw off was sluggish. Normally the port has worked like a dream, even in the last few months when Case’s white count has been high, indicating that there was likely some beginnings of a problem with the port.

Case’s white count was 17. Not much different from the 15 and 10 we’ve had in the preceding two months (normal is under 5), but not a great thing, for sure.

A little while after dosing, the swelling started around the port. So, the port is in his side, at the base of his ribs. It is about the size of a quarter and sticks out (on Case) about a centimeter or so. So, when the port breaks at the base, cerebrospinal fluid flows backward down the catheter and out the break and sits under his skin around the port, looking like a big goose egg. The body absorbs and then more flows out depending on activity level, etc. so the swelling can go up and down.

So now we’re:

  • looking down the barrel at port surgery. Mind you, we are extremely blessed to be facing our second port when we have a friend who just had surgery to implant their fourth port. Neurosurgery is not fun, especially for a kid, especially for a kid who really has no understanding even what this is all for.
  • looking at Case having to miss a dose for the surgical sites to recover. We hope there is a way to avoid this, but maybe not.
  • looking at a recovery time out of school (and likely the therapies that go with it) of about 2 weeks.
  • facing a decision of whether the entire port will be replaced including rethreading the catheter up the spinal fluid (a more invasive surgery) or possibly just the reservoir of the device. This will depend on whether the catheter is still high enough in his spinal column prior to surgery – they’ve been known to slip down and out of the spinal fluid, another complication of an intrathecal port.
  • Intrathecal tattooprobably going to have to have the surgical stitches at the port site and the spine site taken out at Vanderbilt instead of here at UNC. If you don’t know the story of the original port stitches being removed at Vanderbilt the day after Christmas, overgrown and with no sedation because no one wanted to call in an anesthesia team right after Christmas for stitches (although in retrospect, everyone knows that is what should have happened), then you don’t know why this creates anxiety for me. 10 solid minutes of bloody murder screaming, 2 doctors, 2 nurses, blood, me holding Case in a figure 8 hold position, 1 video player and a sweet crying “thank you” at the very end by my lovely God-sent child. Maybe you can explain something like that to a typical child, but for Case, it created medical trauma that took several months for him to semi-recover from with concerted play therapy.
  • and I’m not even gonna go into listing the various complications that have happened with this port, separate from the two already mentioned above. Seriously.

So here is where I’ve just got to give it over to God and pray. It is too much for me. Too much I could be anxious over and that anxiety will get me …


Your prayers are appreciated.


You may also like:

9 Responses to “Intrathecal Trial Update – Of Ports and Prayers”

  1. Oh Melissa! I’m so sorry!! I hate that you guys have to go through that again, but I know God is going to deliver you through it! I will be praying. Love you.

  2. Praying so hard every day for you and case, trey and deb, all the sweet, brave pioneer boys who don’t fully understand what this dance is all about. It will help hundreds of boys to come. Praying for a clear plan and safe procedures. And a new device, every day always.

  3. Keeping Case and you in my thoughts and prayers! That darn port!!!!!

  4. Praying!! Praying!! and more Praying! I hate that you and he are having to go through all that. Laugh when you can, sleep when you can, just breathe when you can…and leave the praying to us (well…you know). We love y’all so much! 🙂

  5. Hi Melissa, Iam Quinn Stutes Grandma. I am praying for you & Case & your family. The ports are always a serious concern. I think of you guys often.

  6. Many prayers for Case and for you, that all goes smoothly and as easily as possible. Praying that an entire replacement isn’t necessary. Your story of his having the stitches taken out makes me sad. I’m not sure you could explain that even to a normal child of his age.

    • Thank you Elaine. Yes, the event with the stitches taught be a valuable lesson to trust my instincts when it comes to his care. Although unfortunately we have to force our kids to do many medical things, there is a line where we should be prepared to call a quick HALT once we realize we’ve reached it.

  7. Having been through these very complications when i had my LP shunt (is threaded the very same way w/the reservoir and valve sitting on the side right under the ribs and lumbar catheter in the sub-arachnoid space and threaded to base of t-spine and only difference in a shunt it runs in to the peritoneum to drain. Anyways i have many pictures of the same ‘goose egg’ both on my low back and on my side – I pray this works after this replacement and I pray it goes well and easier for Case, with little regressive trauma. Many hugs and prayers for your family.


    • Thank you Erica. We are very hopeful that this surgery and recovery will go as well as the last one. Case bounces back quickly, a little TOO quickly sometimes! 🙂