Tuesday, September 13, 2011

Busy day

Keegan had a rather busy day.  Our suspicion that the fever wasn't going to really follow a "cycle" anymore, but rather become one constant fever, appears to be true.  He had a brief reprieve yesterday afternoon, but he came back up to the high 101s last night.  Today, he stayed between 99.8 and 100.5 until early evening when he started to get back into the 101s.  It's not looking good for tonight.

He looked downright awful today.  He is very swollen, and his weight is up even more.  He has absolutely no color whatsoever.  His eyes are red-rimmed and puffy.  Keegan didn't get out of bed but once today.  Despite having a great stash of new toys, he barely played with anything at all.  After getting some good smiles and lower temps out of him yesterday, I think we were all hopeful that today would be a better day than it was.  I hate to see how this disease process is taking so much out of my amazing little boy.

Keegan did have another brain MRI and angiogram today.  They were trying to track down the images from the last one in June before making any determinations.  They didn't see any signs of inflammation in his brains.  There was evidence of quite a few micro-bleeds, but we won't know if there are more/bigger/etc until today's scan is compared to the previous ones.  We also took him over to the opthamology clinic this afternoon to have his eyes checked for inflammation.  The doctor didn't think she saw much, but he wasn't a great participant in that testing either.  There are a few other lab tests hematology wants to run, and they are trying to decide whether or not to do a bone marrow biopsy. Keegan hasn't had one since January 2009.  Then, all the attending doctors on Keegan's case will meet by the end of the week to make some decisions.

I'm not sure what to think in all this.  Some of the last remaining ideas they have for a definable diagnosis are very scary, but I'm almost more scared that we will likely end up calling it some kind of immune disregulation that leaves us just guessing on the best course of treatment.  Even then, the drugs that are being thrown around are no laughing matter.  It's starting to feel like a no-win situation, no matter what.  As we wrap up two full weeks of being in patient here, we can see that this is going to be a very long road either way.

Thank you for keeping Keegan in prayer, along with everyone working tirelessly to help him feel better. We are praying the Lord will keep his loving hand over us at all times as we make the difficult decisions ahead.  Thank you so much.

1 comment:

Susy said...

I'm a day late, but I wanted to wish Keegan a very happy birthday! You're in my thoughts and prayers always!