Sunday, February 5, 2012


Things got a little busy yesterday, so I wasn't able to post that Keegan actually was allowed to go home in the afternoon.  His ferritin level was 4,000, which was a good improvement (still very, very high but coming down).  However, his blood counts all continued to drop, while some of his liver numbers worsened also.  The hope right now is that these levels are all just "peaking" at a rate slower than the inflammation markers and that they will normalize in a few more days.  The blood counts dropping is slightly confusing because steroids should cause them to be artificially high.  Steroids generally stimulate your bone marrow to kick everything out, even underdeveloped cells, making all your counts rise temporarily.

There wasn't much we could do about any of these things quite yet except for watch the levels, and we can do that from home.  We will recheck labs on Monday morning in clinic.  We can do transfusions or start him back on GCSF outpatient if need be by then.  For now, there were more risks to being inpatient and picking up a new infection than not drawing labs for one day at home.  We will finish the steroid burst today and return to 7mg of prednisone tomorrow.

Keegan is still very, very tired.  That is likely to continue for awhile longer.  His GI problems are worsening too, which is the opposite of what we've seen in the past on higher steroid doses.  Not sure what to make of any of it yet.  We will follow up with rheumatology at the beginning of the week.  We need to get him settled from this flare before we make any other decisions in regards to his treatment.  Since we weren't able to identify a viral trigger, we will probably need to resume the steroid wean and see if he continues to flare each time we get to a certain dose or not.

Thank you for all for each and every prayer said to help Keegan get home once again.  We are so grateful.  More tomorrow once we know it.

1 comment:

Jenna said...

Hi Keegan
My name is Jenna and I came across your site. You are an amazing precious gift, and a special earthly angel. You are a courageous, strong and determined fighter. You are a brave warrior, smilen champ and an inspiration. You are a super hero, a super trooper, tough cookie. You have taught us all about life.
I was born with a rare life threatening disease.