Tuesday, January 29, 2013

Date Is Set

I can proudly announce that we officially have a transplant date set! Our scheduled surgery date is Thursday, April 11th, with us "reporting" to Philadelphia for blood work and testing on Tuesday, April 9th. Stephen will be admitted to the hospital the day before the surgery and Kristin will be admitted the morning of and then all of our lives will be changed forever!! It's so awesome to finally know that we have a HUGE light at the end of the tunnel and this is really going to happen....but, we also have to overcome this stupid c-diff hurdle first.

So Stephen will take his last dose of vancomyacin on February 5th. Then he'll have two weeks of another antibiotic called rifaximin. And then a week after his last dose of rifaximin, we can take a culture to the lab to find out if he's done with the cdiff. Right now is the critical period of the vanco taper in that he only gets a dose every three days. So if he was going to be symptomatic, now would be the time. So far, so good. But....(another big but), he hasn't ever been symptomatic, so I'm not holding my breath. We're just chugging along, doing what we've been doing with the bleaching and the cleaning all this time, and hoping for the best! And in the meantime, we're seeing the immunologist tomorrow to set Stephen up with an IVIG infusion that will help to boost his immune system to also help fight off the cdiff.

When Stephen was an infant and throughout his first 9 months, they would regularly check his IGG levels (a marker of your immune system) because his has always been low. He had a few IVIG infusions in the hospital (some he didn't handle well and his blood pressure would plummet), the last one which was around 9 months of age in the sedation unit. He handled that one well and we haven't had to do one since. But a doctor out at Cincinnati Children's suggested it might help with the cdiff, so we took a blood level and wouldn't you know, Stephen's IGG is low. So we'll give it a shot and hope it helps! But Dr. Alpan, the immunologist, who we see tomorrow, will give the final word.

Oh and then we should know about the culture on or around March 5th. Just in time for Aunt Jess' birthday! And then we'll know for certain whether or not we can start planning for April 11th. I found out today that one of my friend's daughter's birthday is April 11th. Her beautiful baby girl Sami lost her battle with kidney disease this past year on September 11th. I really don't think it's a coincidence that Sami's birthday and Stephen's transplant date are the same day, so now I'm even more hopeful that we'll be this stupid cdiff!

But in the meantime, I have a big favor to ask. I've started the search for a furnished apartment in the Philadelphia area (in the city and outside) for the 6-8 weeks that we will be there. If anyone has any connections they'd be willing to share with us, I'd greatly appreciate it (email LSchwartz531@gmail.com). Ideally, it would be wonderful to have a 2 bedroom apartment, but they are definitely on the pricey side when you lean towards the corporate rentals, so it would be nice to see what else is available. I'm hoping one of my awesome readers might have a great hook-up they'd be willing to share.

Thank you all so much for all the emails, texts, and comments you've left about Stephen and his hero Kristin! We so appreciate all of the prayers and support!!!!

1 comment:

  1. Absolutely wonderful news!!!!

    Uncle Dick and Aunt LuAnn