This pic was on our official KU college tour. I’ll be honest and admit to waving the wheat and chanting RCJH while he and Mason were both in my belly. Actually my dad nicknamed the baby in my belly (I didn’t find out the sex of either of my chickens until their arrival) “baby wheat.” Zero pressure to be a 5th generation Jayhawk. None. Promise. But anywho…

Luke tested positive for RSV around Jan 9. I remember sending texts to people and posting how awesome his labs were and singing loud on the way home from the hospital when my phone beeped and BOOM, positive test results. Talk about a fun sucker. His docs put him on ribavirin (after chasing it down around the state). RSV sucks-it’s more than just the common cold like I thought. And the side effects of ribavirin rival the symptoms of RSV. Fast forward two weeks and then…last Tuesday at his beautiful afternoon at Children’s (grim-besides the fact I get to see so many of my now friends) it was decided Luke would get a Covid vaccine, a pneumonia vaccine, and a flu shot. Same time. All at once. It. Kicked. His. Ass. Just in the last 24 hours luke has shown major symptoms of RSV. It’s taken no FOREVER. While getting over this and the triple vaccines, he has continued to wean his steroids (done on Feb 7), is on NO pain meds (methadone done), has started a new med for his lungs. (MMF) and has started a very small steroid that he has to do to get his adrenal glands going after all the other BS. Today we had our usual Tuesday day at Children’s.

TODAY————Immunoglobulin still above 500 so no transfusion today! It went down by a smidge but not a lot.

PLT holding
HGB holding
ANC down but Kohler said he is not concerned at all about any of his labs (lymphocytes still low attributing to low white blood cells aka ANC but that takes a while and the steroids have slowed those down)

Bicarbonate took a nose dive but he also cut his sodium chloride by 2/3 last week (GROSS giant salt tabs he has to take 6 times a day). Yet sodium level steady but could be from the 3 bags of IV fluid we have done last 24 hours. That could be explanation the poop soup. That’s Dr. Suz interpretation.

Luke was supposed to receive “grenade saline fluids” that I just hook up and they go through his PICC line. Instead a gigantic IV pole with bags of fluid and tubing was delivered. I made the most of it and used the IV pole as a microphone to sing Janet Jackson’s greatest hits (got a ticket to her upcoming concert in Denver) and strangely enough I remember most of her choreography. Thanks for the IV pole. I got laughs instead of eye rolls from my boys. Bonus!

Kohler is “happy” Luke felt miserable with vaccinations-most likely from the covid vaccine but that doesn’t guarantee any coverage but a great sign his body reacted. The new MMF he started he will titrate up in two weeks. And the hydrocortisone tabs kick start his adrenal glands. Hydro is a steroid but significantly, significantly lesssassssss harmful than the shit he’s been on for so long (done on Feb 7 with that shit). His weight is down about 2 kilos which isn’t surprising. The restlessness, anxiety, trouble sleeping could be withdrawal or just a big clusterfuck from coming off shit and going on more shit. The clonidine is helping with that and will be short term. Luke doesn’t want another stupid calendar to wean off any more shit. (I get an F in today’s recap vocabulary).

He will eventually see an endocrinologist in a couple months to do some sort of cortisol test to see if his body has started making it on its own-another specialty to add to my long list of degrees.

Kohler doesn’t like the idea of Luke going to Larry (he asked if it would be possible to drive with Adlers this weekend but can’t go to house/bars/ etc but he’s ready to be able to go anywhere more than 1 hour from hospital but no elevation), but Luke has his blessing as long as Luke very much limits limits limits his surroundings and wears his N-95. Luke is a smart little nugget. Although his name is now Ricardo, because he has grown a nice little mustache. When Luke says no to me for anything, I just tell him that Ricardo already told me yes. Rock fucking chalk. I hope we pound Houston on Saturday and gently beat OSU tonight. I only have a cocktail on days that end in a “Y” so lucky me, today is Tuesday.

Buckets of utter confusion and gratitude,

Sux and Ricardo