More on Mason’s platelet issue

What a week it has been! About 5 weeks ago, Mason’s blood was drawn to test for a genetic disorder that could be causing his body not to produce many cells that create platelets. The treatment for this genetic disorder would have included a bone marrow transplant. On Tuesday, we got the results back from this test and they were NEGATIVE! Thank God! Now we are back to square one trying to figure out what could be causing his body not to produce these cells.

Yesterday, we went in for blood work, x-rays, and another bone marrow test. Our appointment was at 8:30am. Since Mason is put under for the procedure, he is not to have anything to eat or drink the morning of his appointment. Apparently my brain was not working yesterday, because I went along with our normal routine and gave Mason a bottle! I realized halfway through the bottle that he was not supposed to have anything to eat or drink. I called the hospital and they said that, thankfully, sedation had another opening at 1pm for the procedure. The only issue was that Mason’s blood needed to be drawn before 11am. During the last procedure they drew Mason’s blood while he was asleep to save him the trauma. So, we arrived at the hospital around 9:30am. They put numbing cream on Mason’s arms and then we got x-rays while the cream was taking affect. Afterwards we went to the lab and they drew 15 vials of Mason’s blood! The hematologist had warned me that they were going to take the maximum amount of blood they could take for his size, but I had NO idea that it would be this much!!

vials

After the blood draw, we went to the hematology clinic where we requested a pediatric anesthesiologist to put an IV in since we had so much trouble with this during his last bone marrow test. Thankfully the anesthesiologist was able to get the vein on the first try. At this point we were still over an hour away from the bone marrow test at 1pm. So, we had to wait in a waiting room for quite a while. Mason finally fell asleep in my arms and was able to get a little bit of sleep since he had missed both of his naps.  Then we went down to sedation for the bone marrow test. The procedure was very quick and they let Mason sleep for almost an hour afterwards so he could get some rest. I felt awful about the mistake I made with his bottle. We should have only spent a couple hours at the hospital, but since we had to do the blood draw by a certain time and couldn’t do the bone marrow test until a certain time, we ended up spending over 5 hours there! Mason was such a trooper though and he did so well. Also, my wonderful Mom stayed with me the whole time to help me out.

We got results from the x-rays after the bone marrow test. They were testing for an issue with the bones in the arms that could be a cause for this platelet issue. His bone looked great though, so we ruled that issue out. Over the next few weeks, we should be getting test results back from the many tests they are running from all the blood they took. We also should get results from this second bone marrow test by Friday. I hate to see my son go through all of this and I’m hoping for resolution soon. Best case scenario is that all of these tests come back negative and that one day Mason will grow out of this and his platelets will return to normal levels. We may never know what’s causing this platelet issue, and I’m okay with that.

Poor Mason is going to have another long, rough day at the hospital tomorrow. We will be at Riley for his pre-op appointment for 4-5 hours. He will have his blood drawn again, will miss his naps, etc. I am very thankful though that his surgery falls on a Monday so we have the weekend to rest!

 

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