(Facebook and Instagram post at 7:00 am on March 21, 2016)
"Patiently waiting with a smile on his face to go into the OR for back surgery. (He is having new rods put in his back for his scoliosis.) Mason, "you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you'll ever know." ❤ Please remember him in your prayers that surgery goes well and his recovery is quick! #bravestboyiknow #miraclemason #hearttransplantsurvivor #donateforlife"
(Facebook and Instagram post at 5:00pm on March 21, 2016)
"Back home playing basketball already!?!? Thank you everyone for all the prayers and sweet thoughts!! We ended up having to cancel his back surgery just minutes before they took him back to the OR. Mason's platelet count is too low for surgery. This could cause problems with controlling the bleeding during and after surgery. We aren't exactly sure why. This could possibly be caused by his immunosuppression heart transplant meds. He's never had this problem before though!! We are trying to get in ASAP with hematology for a consult to hopefully find a cause and treatment. #neveradullmoment #miraclemason #hearttransplantsurvivor #donateforlife"❤
Thank goodness for a great anesthesiologist who had 'done his homework' prior to the surgery and noticed that Mason's platelets had dropped significantly from end of January to end of February. So he wanted to draw a cross a match to have blood on hand in case the doctors had trouble controlling the bleeding during surgery and he needed a transfusion, but he also decided to draw a CBC to check his platelet count (because the last time we checked was 2 weeks prior). Mason's count came back even lower than his last blood draw, which was too low to safely do surgery. I'm so grateful he checked because Mason could have dangerously bled out during and after surgery!!
The transplant team had told me the day of his biopsy (February 29) that his platelets were lower than his normal and that we should just keep an eye on his levels and to let them know if he started having nose bleeds and/or bruising easily. They also rechecked a CBC a week later just to make sure the results on February 29 had not been inaccurate(and the results were about the same a week later). But I had no idea how drastically they had actually dropped! I do wish I had been a little better informed! Although, I also could have asked for exact numbers when they told me about it in February, but I didn't!
Here is what his platelet counts have been...
*January 30, 2016: 350 (thousand) which is about his normal
(normal for most people is 150-400)
*February 29, 2016: 62 (thousand)
*February 7, 2016: 64 (thousand)
*March 21, 2016: 32 (thousand)
Surgery is not safe under 50 (thousand). Spontaneous bleeding can happen at 10 (thousand or below), but 30 (thousand) or below is not safe for sports or any where he could fall down and get hurt!
We waited for for several hours after his scheduled surgery time to try and get into a hematologist (blood specialist) for a consult, but they were too busy!! I wasn't very happy!! I was told his surgery was 'elective', therefore it wasn't an emergent case they needed to fit in!! And, it actually took us a whole week to get into them... needless to say I felt like I was the only one worried about the drastic drop in his platelets!
We spent all day (basically from 9am-5pm) this last Monday at Primary's with Dr Afifi (she is the doctor who saw Mason a few years ago when he had the parvovirus that was destroying his red blood cells) and her hematology team.
This is what we learned...
Mason's platelets had dropped down to 20 from 34 in a week! Yikes! So they gave him a platelet transfusion. Not only did he need a transfusion having dropped that low, but it was also to try and determine what is destroying his platelets, the likely possibilities she said were that it could be antibodies destroying his platelets or possibly 1 or 2 of his immunosuppression meds destroying them. (This was important because the way to treat which one it is, is different) The plan was to check a platelet blood count 15 min after the transfusion on Monday and again the next morning. (but the blood sample right after was ruined by the lab, so we didn't get the results!) If they dropped again super quickly (almost immediately) then we would know that it is most likely antibodies that are doing it. If the platelets did not drop quickly, then it could be one of his medications slowly destroying the platelets.
Here's what his platelet counts have been this week:
Monday March 28: 20 (thousand)
Monday March 28 after his platelet transfusion: ? (they were probably 80-90 thousand)
Tuesday morning March 29 8:45 am: 30 (thousand)
From the transfusion and platelet count the next day this is what we learned...
The docs believe he has ITP (idiopathic thrombocytopenic purpura ) which basically is when you have an extremely low platelet count because as soon as the bone marrow makes the platelets they are getting destroyed by certain antibodies. How he got this we aren't sure. Possibly as a side affect from a virus he may have had in the last couple of months. (And ITP is not contagious, so no worries there!! We won't be spreading this condition around!! ) The way to treat this is with very high doses of steroids😩.... Which we started Tuesday night and he will be on them for at least 2 weeks.
The hope is that the steroids will get rid of these naughty antibodies! (I love and hate steroids all at the same time!!) He is taking 24x his normal maintenance dose of steroids (for heart rejection)! This will suppress his immune system significatly more than his normal suppression 😫.... So please keep your distance from Mason (and our family) if you are sick at all! Also if this condition doesn't improve quickly, he will not be able to play baseball this season. It starts mid April, and we has scheduled back surgery when we did so he'd have a month to recover before baseball started!! It's the one team sport our little heart warrior can play and he loves it. I do not have the heart❤ to tell him because of this platelet issue now he may not be able to play. Please remember our Miracle Mason in your prayers that the steroids will fix this most recent speed bump, and quickly!!
For now we will probably post pone back surgery until June. Giving his body time to make plenty of patelets for a safe surgery and also so he can play on his little league baseball team (hopefully!)
Next week we will see hematology again to follow up on his platelet count and while we are there we will also do his monthly IVIg infusion... Because of Mason's health issues and his extra immunosuppresion right now we will be staying home for Spring Break, so wish me luck with lots of bored kiddos!!
(I've been working on a post for Febrauary... we had 2 birthdays, a baseball tournament in vegas for Braiden, and more! Hopefully I'll finish it soon!)
Thanks for checking in on Miracle Mason and our family❤!