Tuesday, June 21, 2016

Back Surgery or Not?

Just wanted to update where we are with Mason's back surgery and his low platelet issue (or ITP) .... (Mason was supposed to have new rods put in his back for his scoliosis in March, but his surgery got canceled at the last minute because his platelets were too low. A week after that we went to see a doctor in Hematology and found out that he has a condition called immune thrombocytopenia or ITP. At that time we started treating it right away with high doses of steroids.)

Mason had been scheduled for yesterday, June 20th, to finally get his back surgery.  We had scheduled it about 2 months ago when the blast of high steroid doses (40 mg a day vs his normal 1.5 mg a day) seemed to be doing the trick to get rid of the antibodies that were causing the ITP. The key was to try and decrease the steroids and still keep his platelets up. At first the steroids increased the platelets a lot, but then as we started to go down on the steroids his platelets would drop too! So the key was to find a balance of decreasing the steroids slow enough to still keep his platelets up.   We finally thought we had found that happy balance of how slowly we could decrease his steroids and still keep killing off the naughty antibodies. The goal was to get him down closer to his normal low maintenance dose of steroids for the back surgery. The higher the dose of steroids the higher the risk of infection at the time of surgery. 

Then he got a nasty cough in mid May (probably due to the extra immune-suppression from the wonderful but awful steroids!) with some possible pneumonia junk in his left lung.... So we thought we would have to post pone surgery because of that, but after two rounds of antibiotics his cough and lungs were much better! So all of his docs ( hematology , cardiac transplant, and orthopedics ) decided we should go forward with June 20 for back surgery because his platelets had remained around or even above 100 (100 is the number of platelets our orthopedic team feels comfortable with him having at time of surgery, even though normal is 150-400) for a few weeks in a row (and he was finally closer to his normal lower dose of steroids.... so right on track with our goal in mind ). We even took a quick trip to Lake Powell on June 8th, because his platelets on the 7th were 128!!! 

Now for the curve ball.... Last Tuesday I started to notice he had new bruises everywhere and then Wednesday when he woke up covered in more bruises and a bloody nose I called his hemoc and transplant docs and had his platelets checked.... His platelets had dropped to a rather dangerously low number of 14 ( the lowest he'd ever been) ..... So probably needless to say, his back surgery was officially canceled!! For some reason I'm now thinking he's just not supposed to get this surgery, at least for awhile!! One of his transplant nurses when she called me with his platelet count said to me, "14 is very low, so please just keep a close eye on  him and make sure everyone is super careful with him. If he got hurt it would be really difficult to stop the bleeding!" My reply was, "should I just wrap him up in bubble wrap??!!"

We immediately bumped his steroids back up (this time up to 20 mg a day .... but we had gotten down to 4mg a day). And then yesterday we spent all day at Primarys. We met with Hematology and decided that the high steroid doses were only going to be a temporary fix for Mason's ITP condition and it's not healthy to stay on them for too long. So they started him on a new infusion med , Rituximab (a type of chemo med which will wipe out his immune system, but it will not make his hair fall out) to try and fight this platelet issue more aggressively (it will be once a week for 4-6 weeks but the extra immune-suppression can last 6-12 months)! Please Remember miracle Mason in your prayers that this will do the trick ! 

As for the back surgery? Well, maybe we will try again in 2-3 months! Only time will tell I guess!!

Mason is one very brave and strong boy 
that know how to rolls with the punches! He just takes
what life throws at him and enjoys the journey!

This picture was taken at Lake Powell 2 weeks ago.

Mason decided to catch a little cat nap during his Rituximab infusion yesterday. Such a good boy, not one complaint about our sudden change in plans! I'm so grateful for him and his great attitude!


cici said...

Sorry about all the "curveballs". I think you are right about someone not wanting him to have that surgery just yet.
I will keep him in my nightly Prayers.
He is getting soooooooo big! I hardly recognized him. Please keep us updated.
{{Big Hugs for him}}

Laurie said...

Thanks for the update! I'm guessing more people than you realize check in on you guys regularly! Glad to hear things are okay- but bummer about the unexpected delay on surgery! :( LOVE that last picture of Mason- what a doll!

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