The Atypical HUS Foundation

Well we made it through this verrrry long day.  It took 4-ever to get pheresis going because of waiting for FFP to thaw and of course the wonderful computer system slows everything down, but we were done by 2. 

We headed off for dialysis and were visited by many of our old hospital friends, which Nathan chose to ignore all the excitement by drowning us out with the tv.   It's his way of handling his stress.  He did take a break to socialize, okay, I mean "kick his dad's butt" in Yahtzee and the game of Life with his Godmother, dad and brother so all is good. 

We're in the room now so we have two nephrologists following this, a resident and med student who are both thrilled to be following such a rare and cutting edge event!  He'll be getting his Eculizumab at 10 so they won't have to keep opening his port.  Isn't it funny, our kids are kind of like celebrities in a hospital setting!  Everyone buzzing around with excitement and curiosity about their ultra rare condition, because as our resident says, it may be the only time he sees a patient with this.

 

I've taken the first of my two anti-bacterial showers they wanted me to take before heading over for my surgery in the Ronald McDonald room and will take my second right before surgery.

 

They have consulted with neurology, concerned that the new kidney will upset his seizure med balance, but the neuro people are confident with his current doses, so we're hoping they're right!

 

Wish me a good night's sleep and sweet dreams, Bill had the brilliant idea of Nathan sleeping with us last night, ugh!  Bill fled about midnight and I remained to untangle, put his cpap  back on repeatedly and have lovely nightmares!  Good night all, I hope to be lucid enough Wed. evening to update again.

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Comment by Phyllis Ann Talbot on August 31, 2011 at 1:16pm
Thoughts and prayers with you all all day and in the coming weeks!!! Can't wait to hear how everything's going !!!  Love you all!
Comment by Linda Burke on August 31, 2011 at 8:42am

I just left this message on Bill's page, but trust that others in our online community join me in best wishes to the Biermann family over the coming days, as Nathan receives a kidney transplant (his mom Cheryl is the donor) with supportive Soliris therapy :

Prayer for Nathan and Cheryl,

Loving Father, we entrust our friends Nathan and Cheryl to your care; guide with wisdom and skill the minds and hands of the medical people who minister in your Name, and grant that all effects of illness be removed, that Nathan may be restored to soundness of health and relearn to live in more perfect harmony with You and with his beloved family and friends. Amen


Comment by Heather Still on August 31, 2011 at 8:19am

Thinking of you guys today! 

Comment by Dana M Simone on August 31, 2011 at 7:45am

Many prayers for you all today...God bless.

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