Saturday, December 20, 2014

Change of Plans

Mason came down with a high fever of 103 and a nasty cough the night before he was scheduled for his back rod expansion surgery. Such bad timing! He hasn't been sick all fall! We were supposed to check in at 6:30 am to same day surgery on December 10, but instead I called at 6am to cancel after being up all night with a pretty sick little guy.  The fever lasted three days and the cough has lingered, but is much better than it was. We probably won't re-schedule his back surgery until January, giving him time to completely get over his cough. Its just not a good idea to mix anesthesia with a cough, especially with how prone Mason is to getting pneumonia after being on the breathing tube for a surgical procedure. Although it certainly would have been nice to do it before the end of the year, since we've already met our max out of pocket with our health insurance for the year. I guess we will just meet our deductible and max out of pocket really early next year instead!

As for the IVIg infusion treatment that he was also supposed to receive during December 10's hospital stay, we canceled that as well because of being sick. Since he's feeling much better we are at Primary's right now, Saturday night December 20, staying the night while he gets that IVIg infusion.
He's such a funny boy..... he was super excited to come stay the night at the hospital! Only a frequent flier kiddo like Mason would be excited to go to the hospital!

I talked to the transplant team this week about the results from Mason's immune-assay test that we drew at clinic two weeks ago. This test looks at how your body is responding to immune suppression treatments/ medicines. Mason's results showed that he is very immune suppressed. The team does not want to treat him with Retuximab (an additional immune suppression iv medicine) at this time. Although it is possible that it would help get rid of his chronic antibody rejection, it would not be good for his little body to be more suppressed. It is one of those 'fine line' decisions. If his heart function was down because of the rejection then it would be worth taking the risk of increased infections, but since his heart function remains strong and healthy even through this rejection we don't want to suppress him any more than absolutely necessary. With these results though, we do know how very immune-suppressed Mason truly is, and how important it is for him to stay away from anyone who is even the slightest bit sick.

Thankfully Mason was feeling well enough to return to school this week,
because he was so excited to sing in Westfield's Christmas program and to
 participate in his class party! And, I am just so grateful for all the  'normal'
 kiddo experiences Mason has been healthy enough to enjoy this year.

Now we just hope and pray for some healthy holiday fun for
Christmas is just a few days away! 

1 comment:

BradSneed said...

Love you all, Merry Christmas