Sunday, September 11, 2011

So much for hoping

Last night, I was marginally hopeful that Keegan's latest fever cycle (#13) would break overnight.  I was wrong.  Very wrong.  He had two 104 spikes overnight requiring IV tylenol, and once again, he did not come below 100.5 during the day.  He did spike up once during the day.  We held off on the tylenol, and he came back down to this new baseline on his own after an hour or so.  Just like last night, he is sweating madly, has come down to 99.8, but his heart rate has stayed the same.  Not looking good for tonight.  Tomorrow will be day 6 of this cycle....if it is truly a cycle that will break, rather than some strange new permanent fever.


Perhaps as a direct result of the new intensity of the fever, Keegan has completely stopped eating and is hardly drinking water anymore.  We ordered him a pizza for lunch because he seemed to be in good spirits late morning, despite his temperature.  We put it on his tray, uncovered the plate.  He barely had time to smell it before he threw up horribly.  GI lifted all restrictions on his diet, just to see if he would eat anything at all.  We had told him that his absolute favorite food of all time used to be quesadillas.  We ordered them two nights in a row.  Last night, he took one feeble bite of tortilla, but tonight, he told us to take it away immediately.  I think Gray and I were both hopeful that he would have some appetite for at least something, but now even goldfish crackers are being refused.  I can't say I blame him though.  Who does want to eat when fighting a fever?

The other significant change recently has been the beginning of inflammation in Keegan's joints, most prominently his ankles.  We noticed it first on Thursday.  The video below was taken on Friday.  He is now having trouble just walking and cannot run anymore at all.  Rheumatology is aware of it, but they are trying to round out their last ideas before doing anything just yet.  Obviously this is something autoimmune, just not sure what yet.  They are waiting for the images from his last brain MRIs tomorrow, but it sounds like Keegan will have a repeat brain MRI (actually an angiogram) and possibly a CT of his legs.  For now, he doesn't feel like getting out of bed much anyway, so we are doing our best to massage his legs to keep him comfortable for now.



We did not draw any labs today to give his body a break.  Tomorrow, we will see if he is in need of a blood transfusion again.  My gut instinct is he will.  The motility study will not happen tomorrow either.  It may not even be this week due to scheduling conflicts.  We certainly need to proceed with it to address his multiple GI problems.  However as this fever has evolved and the inflammation has begun to attack his joints, it is seeming less and less likely that whatever is causing the fever is also causing his GI issues.

Tomorrow morning at 6:24am, my baby boy will be four years old.  An eternity in the blink of an eye.  I'm praying tomorrow will be a good day for him.  We are ready for one of those.  And he deserves one of them too.

1 comment:

Cody said...

Maddie - thank you for your continued updates .. each day it's the one thing that I make sure to check.

So sorry that Bug's birthday isn't under happier circumstances. So hard to watch the video clip without tears.

Thinking of you many times each & every day ... praying for healing & comfort.
Love & Support .. Cody, Gary & Griff