Monday, November 14, 2011

Disappointing news

1.  Keegan's ferritin level is down (which is encouraging) but not near what I would have expected with double doses of anakinra all weekend long - 500.  I don't have the full set of labs yet to know the whole picture, nor did I hear from the rheumatologist today.  My frustration and disappointment with this recent flare is difficult to put into words.  I am reluctant to put any of it out here until we have spoken about it all with the team.  Right now, that's what is needed.  We need to meet with transplant, hematology, and rheumatology to make the next decisions in Keegan's care.  Gray and I really feel like the rheumatology approach is not working well enough to control this disease process, but we are unsure where that leaves us as far as daily management goes.  Tomorrow was supposed to be a scheduled reduction in the steroid dose, which is still at an enormous dose for his size.  Something tells me that won't happen.  Having to stop the steroid wean is going to be killer.  He is already not scheduled to be off them until February!  Hopefully we will have more information tomorrow.

2.  We had to restart Keegan's tube feeds today.  His electrolyte levels were all sorts of screwed up.  His eating has not recovered since the virus, and frankly, it may not.  We anticipated his appetite and GI problems would get worse as the steroids were weaned, and this may just be the first step in that process.  The tube feeds will be twice a day to start and should help normalize his levels.  That is helpful because the deficiencies were starting to cause him some severe cramping and pain.  I hope it will help some of the stomach pain he has been having lately too.  Keegan has been constantly complaining about his tummy and has been retching all day long.  It would be nice if giving him some nutrition with an easier-to-digest food through his tube helped both these problems.  However, it was nice to be tube free for awhile.  I'm not looking forward to it's return.  Tube feeds are better than TPN, I guess.

Thank you for all the kind words and encouragement today.  This is a very difficult and uncertain time for our family.  It means the world to have such loving support as we slowly work our way through it.  Thank you.  More as we know it.

1 comment:

Lauren said...

Thinking of you all!