Bad news, Bears

 Most of the K’s for Keegan team:

Kelly and Kristen aren’t just members of the superlative K’s for Keegan team.  They volunteer with Make A Wish and are Keegan’s Wish Granters!  (I know I’m being a little elusive about his Wish.  By now, you’ve figured out he has been granted one.  It’s coming!  It’s big!  Get excited!)  More than that, they and Maura are three of my best friends from growing up.  I have known Maura and Kristen since preschool (Mother’s Day Out even?). Our family is so blessed to have such close friends working to facilitate one of the most memorable opportunities of Keegan’s life.  Each of you who supported our team in the race today by running or donating helped make the wish of a lifetime come true for a child with a life-threatening illness.  You may not understand the gravity of that gift until you are the parent of the child making it, but trust me, that words simply cannot express the beauty of those memories for a family.  Thank you.

That’s the good news.  Unfortunately, now we are to the bad news.  Contrary to the connotation of this post’s title, it’s not about our Baylor Bears.  Women and men’s basketball teams are also rockin’ it!  Elite Eight, what?!  Awww, SIC’EM!

But seriously, now.  The bad news.  And it’s big, very bad news.

Keegan is having an MAS flare, but this time, it’s being caused by an infection in his port.  A permanent IV that is tunneled directly into his heart.  

Last night was beyond rough and a little scary.  We ran the first dose of IV tylenol around 9:30pm.  At 2am, his temperature was down to 99.9.  We had noticed his blood pressure dropping, and around 2:15, it tanked.  Then his heart rate started spiking.  The doctors started coming in, worrying he was on the verge of sepsis.  Within a few minutes, his temperature was over 104.  He started vomiting; his heart rate soared into the 200s, and his blood pressure went crazy high.  He was shaking and miserable with almost 30 minutes before we could run the next dose of tylenol.  We pushed some anti-nausea meds and hooked his g-button up to a bile bag that just blew up with nastiness.  Finally, his temp came down into the 99s again, and he was able to get some sleep until the next fever cycle started around 7am.  He did this until about 3pm.  Knock on wood, but it looks like the fever may be gone.  The biggest sign is that his heart rate has come down to normal for the last few hours.  Here’s praying for a better night.

Labs this morning showed a flare happening quickly.  As the rheumatologist said, Keegan is a Ferrari when it comes to getting sick.  There’s no ramping up.  It’s 0 to 60 in no time flat.  Ferritin jumped to 1300 today; blood counts sank lower, and his liver is getting angry.  This morning, all his blood cultures were still negative, and with such a decreased white blood count and ANC, we assumed this was a viral trigger.  The blood culture from his port didn’t grow back positive until this afternoon.  We’ve recultured and are waiting to see exactly what strain of bacteria it is so we can tailor his antibiotics appropriately.

Due to the frequency of Keegan’s flares, the team today decided it was time to pull out the big guns.  A full steroid pulse like we did in Boston.  30mg/kg for 3 full days.  That’s the same as if he were in rejection of his heart.  Hopefully, we will be able to control this flare better by starting the steroids immediately, rather than trying lower doses that don’t fully work.  Honestly, I was a little surprised to hear them jumping to a full pulse at this ferritin level, since it’s really nothing compared to his flares in the past.  There is definitely something to be said for jumping in early, especially in the situation of a bacterial infection that he desperately needs to fight.  The team also said they are discussing where to go from here with his medications.  The anakinra is not enough, especially if we want to have any chance whatsoever of getting him off of steroids eventually.

I don’t think I have to explain how defeating this news is.  Even more so though is the fact that he has a line infection.  We can probably beat it into remission if we can get the flare under control.  With an extremely suppressed immune system, it’s going to be terribly difficult to fight.  Additionally, bacteria have a tendency to colonize on the catheters; they may stop being angry for awhile, but you usually can’t get rid of it entirely without pulling the line.  The bacteria can also invade the bloodstream and the heart.  We are watching both of those carefully, needless to say.  

That’s about all I can handle right now.  I hope it was clear enough to understand.  This is the worst situation that I think we could be in, but Keegan is fighting hard.  His labs are a mess, but he is staying pretty stable outwardly for the meantime.  Keep it up, Buggy.  Please, just keep fighting.

I can end the post on a touch brighter note because I have this little beauty to share: