Wednesday, September 21, 2011


I'm not quite ready to label a post "stable", so "steady" will work for now.  His labs were up and down, again trending back to his old cytopenias.  I'm not sure anyone believed that was something we could correct for good.  We are just hoping he won't need long-term intervention to keep his counts at baseline.  We did not have to give IV fibrinogen for the first time in four days, which was huge.  Levels are still super low.  His bleeding has slowed down a lot though, so we are trying to not expose him to any more blood products at the moment.

The team meeting this afternoon went very well.  We were surrounded by many people who genuinely care about Keegan and our family, who were thinking critically and creatively about his treatment.  Overall, the team is mostly pleased with the direction Keegan is going.  They are still not ready to say he has completely turned the corner, but he is slowly moving towards it, at least.

Here are the main points from today's meeting:

  • It appears most everyone is characterizing this as more of an HLH than MAS, but again the characterization is arbitrary at this point.  It's the treatment that is important.
  • We are going to do a much slower steroid wean and a higher dose of anakinra than usual for the next few weeks, in an attempt to ease Keegan's body toward recovery.  
  • Tomorrow, he will also go back on a small dose of tacrolimus.  The heart transplant anti-rejection drug that we had been avoiding because of his kidney.  Since we now think that he didn't truly have HUS, we may not need to be as scared of the tacro.  Keegan's kidney is still very, very fragile.  We will be starting him off slowly and keeping it at a minimal dose.  They will be trending his kidney function labs daily, and we will stop the second they go more in the wrong direction than he already is from the HLH.
  • The team is cautiously optimistic that we made the right choice in anakinra over chemotherapy (a drug called etoposide, specifically).  He will be getting daily labs for awhile, and we are hoping that Keegan would give us some sort of a warning either in labs or clinical symptoms of relapse, allowing us to jump right in with the etoposide quickly.  The HLH specialist is still reviewing Keegan's case, and she will hopefully be able to weigh in with greater certainty tomorrow.  It is still on the table as a course of treatment.  We were also told today that while it would be much farther in the future, Keegan's heart transplant does not preclude him from having a bone marrow transplant.  The donor would have to not only match Keegan, but his heart donor also, and that could make finding a marrow donor virtually impossible.  
  • An echocardiogram done yesterday showed a few changes from the one he had when we arrived in Boston.  Not necessarily concerning changes, but any drastic change in a transplant is something to watch.  So he will have a repeat echo every 3 days, especially as the tacro is added back in to his drug regimen.
  • Keegan is still retching and would be throwing up if we weren't venting his g-tube constantly to gravity.  Not sure what that's about quite yet.
  • The biggest concern of the day is Keegan's neurological status.  My brief mention of it yesterday was quite an understatement.  Probably because it's a very difficult thing to admit.  Keegan has been a little more than just "zoned out", and it's not from the pain meds he was on (been off the PCA pump for two days now).  He is minimally responsive to some basic questions at best.  His pupils are extremely dilated all the time, no matter the light in the room.  He is having some breathing and heart rate changes that could be indicative of an increase in pressure in his brain.  From a bleed, a stroke, seizures, or from inflammation, we're not sure.  The team felt the risk of taking him out of the ICU and giving him anesthesia for a scan was too great today, but we are planning on making it happen tomorrow.  We will probably go for a CT scan instead of an MRI because it doesn't take nearly as long.  All that being said, he had a promising 20 minutes or so this morning where he sat up a bit and seemed to focus on the TV better than before.  Once today, Gray was leaving the room, and Keegan softly said "bye" to him when prompted.  He spent much more time awake today, and he waved and feebly tried to blow a kiss to Audrey, Mamie, and BD over FaceTime this afternoon.  We will see what tomorrow brings, but this is by far our number one concern at the moment.  
  • If his bleeding is minimal and his counts are stable tomorrow, we should be able to go back to the recovery floor and leave the ICU after the scan.
On a positive note, Keegan happened to be free of any infusions running for a few moments just before bedtime.  Our lovely nurse grabbed a go-kart, loaded Keegan up, and led him on a "sticker hunt" throughout the ICU.  There are boxes of stickers located at different nurses stations around the unit, so we walked around them slowly.  At each one, Keegan pointed to a sticker he liked and even was able to grasp one himself.  HUGE gold star for the day!!  Definitely have a long way to go, but it was really good to see.

In the end, there was truly no decision to be made today.  We are still waiting on some more information and frankly, we're waiting on Keegan.  This could still go either way.  We know that.  I'm not sure we're prepared for it, but we know it's a possibility.  For now, we have to trust that the Lord knows Keegan's struggles and journey.  We will continue to ask for clarity and wisdom as we stumble through each day, and we will thank Him each day for surrounding us with the love of family and friends who help us get through it all.  Thank you.


Lauren said...

Praying for and thinking about all of you.


Rachel said...

Thank you for updating us on Keegan's progress. So happy to hear that the creative nurses have sticker hunts. My prayers are with your sweet boy.

Kira Willingham said...

always praying for wisdom, strength, clarity & courage. Love from San Antonio