No news is good news.
So, I haven’t updated for a long time—basically because everything has been rock solid. Coen has been on Soliris for nearly 2.5 years. I can’t believe it has been that long already. The disease continues to be in remission and he is thriving. Kidney function has not improved or declined during that time. Creatinine still sits at 1.6 consistently. We just changed insurance company’s for the 4th time since the start of Soliris and luckily, once again it got approved without a hitch.
Friday, Coen goes in for a tonsillectomy, our first major procedure since the start of Soliris. Hopefully, this will help his lingering winter colds, sinus infections, and sleep apnea. He’s VERY excited to get to spend the night in the hospital again. Weirdo. I have a little anxiety even though this is a common “normal kid” procedure. We’ve had some serious issues with him under anesthesia. Also, he’s allergic to Codeine and can’t have Ibuprofen—so I’m a bit concerned about pain management. They are automatically keeping us for a day or two in order to make sure he gets enough IV fluids. His kidneys have a tendency to spill too much fluid so maintaining hydration is always key.
We have the ipad stocked with movies and I am going shopping for popsicles and ice cream. We are hoping it will be a mellow, event-free weekend. Wish us luck!
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Comment by Sharon Madrid on July 19, 2011 at 9:24pm -
I hope all has gone well with the tonsillectomy.
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Comment by Dana M Simone on July 16, 2011 at 9:17pm -
Such great news, Jodi. How often does Coen get his Soliris infusion? Hope all went well with the tonsillectomy and that Coen enjoyed his 'sleepover'!
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Comment by Cheryl Biermann on July 15, 2011 at 5:06pm -
Hey, now that he's on Soliris he probably will enjoy his popsicles and ice cream too! Bet you laughed out loud when they asked you about being in the hospital and transfusions! That cracks me up. Good luck, and speedy recovery.
Lots of hugs from all of us.
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Comment by Linda Burke on July 14, 2011 at 10:49pm -
Sending along best wishes for a easy time tomorrow....tonsils, yeech! I'll bet Coen isn't going to be too happy with the NPO order (no food/liquid prior to surgery), so I hope he has an early OR time!
Skyler always loved going to the playroom at the hospital - it was just the acutal medical procedures he disliked (can't blame him there!). I'll be that Coen is thinking of all the great distractions that Child Life staff provide....and a few gifts from friends and family can't hurt to speed the healing too!
Sending a hug, Linda
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