Wednesday, July 21, 2010


Hi all,

Ethan came home from the hospital around 10:30 last night.

Ethan did not end up having surgery, which is a good thing.  Yesterday was a lot of waiting around for doctors to come have a look, consult, order-get-evaluate x-rays, part searching, fixing, waiting, testing and more waiting.  It was tiring as hospital time with an infant always is, but was otherwise okay. 

After additional x-rays to confirm that the internal end of the hickman had not been dislocated, the nurses were able to repair Ethan’s Hickman.  On Monday, they had cut the line below the Y connector and clamped it off.  

Tuesday, they found another repair kit (yes, evidently they make repair kits for these things).  The repair kit piece has the two lumens and the Y connector going down into a single line.

The line that comes out of his chest is a rubber line.  Evidently inside the rubber coating are two separate tubes, one from each lumen. The end of the repair piece has two small metal hollow needles that are inserted into the tubes in the original line.  Once fitted, the original line and the repair piece are glued together and a rubber sleeve is fitted over the place where they connect. 

So, yes, Ethan’s hickman is now glued together.  It didn’t look like Elmer’s glue and they say that it’s pretty tough stuff.   The glued section is under the Tegaderm dressing, so it would be very difficult for it to get pulled on.  But of course we worry, since if the glue doesn’t hold and the sections separate, then Ethan will almost certainly bleed out.  But that's less of a risk than Ethan would have undergone with surgery.

(Any other MPS folks have experience with one of these repairs?  Did it work well for you?  How long were you able to keep the line after the repair?)

All in all, a tiring 36 hours in the hospital, but nowhere near as bad or as long as if he’d had surgery.

On Saturday, we’re all off to Minnesota to talk with the folks there.  Back late Tuesday evening.

Aside from that, the docs have run a list of donor matches in the event he needs a second transplant, but they haven’t reserved anything or requested secondary testing of any potential matches yet.  So the waiting and watching his chimerism numbers continue. But here again, the waiting is better than the alternative.

Thanks very, very much to all of you for your light, hopes, prayers and support.
Some new pics are up on facebook.

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