Saturday, June 4, 2011


That's about the only sentiment I can come up with at this point.  As if somehow not putting it all in writing would make it go away.

Keegan's fever came back last night.  Again.  He has no energy whatsoever and barely sat up at all today.  So far, the fevers have responded to oral tylenol given through his g-tube, rather than having to switch back to IV tylenol.  He's back on IV antibiotics while blood cultures brew for 48 hours.  He had a difficult night last night, so hopefully tonight will be a bit better.

As of right now, we are assuming the cultures will come back negative, as they always have, so we are leaving him on the surgical schedule for Monday morning's port placement.  We don't think the fevers are related to his GI symptoms or the possible graft-vs-host (hoping to hear results from those new slides soon).  It does throw another detour on the steroid pulse.  While the Infectious Disease doctors are almost certain it's not an infection, we need to be as sure as possible before throwing gas on the fire with steroids.  If everything is negative on Monday morning, we are going to call for a rheumatology consult to see if they have any ideas as to what could be going on.  If they don't?  Well, I'm not sure any of us have any other ideas at that point except to look elsewhere for answers.  We certainly can't keep doing this.  Keegan can't keep doing this.

His heart catheterization looked pretty good at first glance, and he handled the anesthesia and 4-hour recovery period with his leg in a restraint to keep it flat and straight very well.  The biopsy results were rushed and found NO rejection!  Best news of the year.  There didn't appear to be any immediate changes in his arteries or any areas damaged by the bad port.  The veins looked fairly normal too.  In order to be extra safe though, the new port will go in through the femoral artery in his left leg and be tunneled up his torso to his chest, avoiding that part of the heart completely.  The only concerning issue was that his heart was very "stiff", meaning it did not relax well between contractions.  (This is called diastolic pressure and is the bottom number reported in a blood pressure reading.)  Considering the cuff pressures we've been getting and the need to keep his blood pressure medication high, this wasn't too surprising.  What we are not sure of is what, if anything, we should or can do about it.  Dr. G was going to look at the images from the cath more closely over the weekend and meet with us on Monday.

That's the little information we know.  I feel like the longer this goes on, the less certainty we have.  Every day adds new complexity with no new answers to Keegan's picture.  I'm so tired of not knowing how to help him.  I physically ache for him and hate seeing this go on day after day.  He is so much stronger than I could ever hope to be.  I wish I could say it's not taking a toll on him, but I worry that it is.  Some days are worse than others.  I pray that those days don't start coming faster.

I miss watching my babies play together and have fun.  I hate that this has become their interaction.  Audrey is one amazing little girl.  She loves her brother and seems to understand that something is wrong.  In one short day, she won't be a baby anymore, and I feel like I've completely missed the last six months of her life.  I just want to be a mother to both of these precious kiddos again.

Thank you again for all your prayers.  We are just floored by how quickly some of you signed up on that Care Calendar.  It means so much to us that anyone would take the time to do something so nice for us.  Gray and I are so appreciative of your support that gets us through these long days.  Really...thank you.

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