It's been an emotionally exhausting 24 hours. I cleared out my desk at Grace Baptist last night; probably the neatest it's been in 3 years and turned in my keys. That was a little more emotional than I had expected. Then later that night after Alex finished his shower he complained (you know, complained isn't really a good word because he really doesn't complain. I notice a wince or something in his demeanor that tells me something is wrong and end up having to quiz him and sometimes drag the information out of him) about feeling like he was running when he wasn't. I pulled out the stethoscope after years of neglect and found that his heart rate was 110 - technically tachycardia. We waited 30 minutes, then rechecked....108. Too high. I texted his doctor who felt it was probably from being anemic and all the other stressors his body is under with chemo, low blood counts, etc. Checked him again at 1am - 108.
His doctor called early this morning wanting us to come in for a quick EKG so he could send it to Alex's cardiologist for comparison. My tire pressure was low on my car so I needed to wait for my dad to come with his handy air pressure thingy to pump it up, then off to get gas and pick up something for Alex to eat. Alex wanted a decaf latte and a scone, I went full leaded and you know how smart my son is? He decided to wait till after the EKG to drink his coffee because it might affect his heart rate.....how smart is that? He's a better mom than I am.
EKG was abnormal, which is to be expected for a transplant patient but there's always that lingering doubt that something is wrong. Dr. Z said he would have his nurse call once the cardiologist compared the EKG's and if there was a significant problem he would call personally - probably the first time I have NOT wanted a doctor to call me personally. Got the word, from the nurse, just a couple of hours later that there is no change to his EKG. Because the nerve connecting Alex's heart to his brain had to be cut during the transplant his heart rate is controlled more by the hormones in his body so when he is under stress, his rate will go up. I think you would constitute all this as stressful.
Then we were off to see his oncologist. He feels that Alex is doing well considering how tough this regimen is on people. His counts are low - in the basement really but clinically he's still doing well. I now have HIS cell number and will keep it until I die (I still have the kids pediatrician's number too - just in case). We made plans for his next round of chemo to take place at French Hospital in SLO after his birthday. Dr. D is arranging with a radiologist here in Santa Maria (who we like and trust very much) to put a portacath in before chemo begins, then we'll start the next round on the 13th or 14th. We can expect a 3-4 day hospital stay along with twice weekly blood draws and possible transfusions.
On our way home we stopped at Avila Beach cuz the boy needed to be outside; he's so tired of being cooped up in the house. It was a beautiful day at the beach with very few people so he was able to walk around a little without his mask and just take it all in.
But the good news, the really great news is that the doctor couldn't find the huge lump that was in his neck before we started chemo......that's a really good start. We'll take it.
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