Friday, September 16, 2011

Biopsy and steroids

I really, really want to write a good update that explains everything that's going on.  I hoped that I would have had time to do so tonight, but things have just been too hectic.  I'm not sure my brain can put it all together, but I will try my best.  As I type, the first dose of the steroid pulse is being hung.

First, let's catch up from yesterday to this evening:

  • After Keegan's fever started getting out of control last night, it became apparent that this disease process was progressing faster than we could treat with the "benign" option of IVIG.  I won't even go into describing what that spike was like.  It was terrible to watch.  He finally stabilized and fell asleep.  We restarted the IVIG because we knew it was necessary, and he did ok through the night to stay out of the ICU.  Temperature started to spike again around 5:30am.
  • We tried to keep him comfortable all morning.  Very difficult to do.  Because his bone marrow biopsy was an add-on, it took awhile to get an OR time, and he finally went back around 1:30pm.
  • Some bleeding is expected after a bone marrow biopsy, especially on some of the drugs that Keegan is on already.  The inflammation has started to "consume" Keegan's platelets, which are the part of your blood necessary for clotting.  Even the ones that are still there are damaged enough to not perform well.  Keegan continued to bleed heavily for over four hours after the biopsy.  After pressure had been held on it for over an hour and topical agents failed to work, we had to give him IV clotting factors.  It is still oozing but not gushing like it was.  There is a possibility this steroid pulse will cause the biopsy site to start bleeding again, but if so, we have a plan to treat it per hematology.  It's a good thing we gave him blood a few days ago.  He will likely need more in the next day or two.
  • The initial read on the bone marrow biopsy didn't show signs of a leukemia or an infection.  There are a slew of more tests to run on the marrow, but that will take a little time.  With those two off the table, we were clear to proceed with the steroid pulse.
  • The doctors have carefully planned out the best way to administer the steroid pulse, which will include more diuretics and some other drugs to help him tolerate it as best as he can.  The first dose should end around 3am.  More labs will be drawn then.  Another drug will likely be started tomorrow to treat the inflammation, along with two more days of steroids.
  • Keegan is starting this pulse out without being in the ICU.  He will have to have vital signs (blood pressure, heart rate, temperature, etc) taken every 15 minutes for the next four hours.  If at any point he starts to worsen, he will be transferred to the unit though.
Again, I will do my best to get a post up in the next day or two with more information.  The most likely answer right now is that Keegan has developed something called Macrophage Activation Syndrome.  The inflammation in his body is such that the steroid pulse has to be started tonight.  He cannot even wait until tomorrow morning.  This is the same three-day steroid pulse he would be getting if he was rejecting his heart.  The drugs we will need to use after the steroids are very similar to chemotherapy, and it will be a long road to recovery.  

If my eyes weren't completely crossing, I would right more, but that's about all I can handle right now.  An even longer night awaits us.  We are so extremely thankful for the outpouring of support and love that has been shown to us this week.  We are scared, and your presence on this road as we stumble along means so much.  Thank you.


Stacie said...

Praying. Praying. Praying. Love you! Thanks for the update!!!

Stacie Smith

Linda McElreath said...

"Now to HIm who is able to do immeasurably more than all we ask or imagine..." Eph 3:20 This is the God who is watching over Keegan now. This is the limitless God that hears the prayers of all of those who love Keegan and your family.

Julie said...

Sending prayers and love.