Tuesday, July 12, 2011

Update

I have too little brain power left to post much of an update.  Just wanted to say that Keegan managed to stay home and out of the hospital through this recent fever.  His temperature rose to 102.9 overnight and stayed pretty high until mid-afternoon.  Through the blessing of being able to give him IV tylenol at home, we were able to keep him comfortable through it without needing to go into the hospital.  It seemed to finally break around 4pm, and his energy came back up a bit just before bed.

In the midst of Keegan's fever, Audrey's separation anxiety, if that's what it really is, hit an all-time high. We have tried to let her cry it out a bit in limited circumstances, but it just ends up breaking my heart until I give in.  I know she knows that is what will happen.  I just can't help but think that she is justified in her worry that we won't always be there.  We haven't been there for her at times when she's needed us.  I know there is nothing we can do about it, but that certainly doesn't make it any easier.

We did head over to the GI clinic for an appointment - to follow up on the steroid wean, his GI status, and of course, the return of these fevers.  We met with his GI doctor and conference called in with our transplant cardiologist.  Looking at his labs from yesterday, everyone is fairly confident these are the same fevers from the other month.  He does not appear to have any viral symptoms, nor does anything indicate a bacterial infection.  Rather, it continues to look like an inflammation related fever...which the steroids should have prevented.  A fever that is breaking through the steroids.  Yikes.  Needless to say, Keegan's medical team is worried (as are we) that the fevers will continue and get worse as we proceed with weaning down the steroids.  As we began to discuss what should happen next and what testing might be needed to run, I had to do some pretty smooth talking to keep them from deciding to admit Keegan back to the hospital today.  In the end, we all decided to do all the planning we need to do before the next fever hits, so that we are prepared and can spring into action then.

It is very difficult to meet with your child's doctors and realize that no one knows what to do next.  Our transplant cardiologist today had a good point.  Every time someone comes up with an idea, the "experts" in that field always say "oh no, that's not it."  Where does that leave us?  Not knowing what to think or what to try.  At least we were all able to agree today that (1) this is not an OK place for Keegan to stay; we have to keep looking for answers, (2) everyone is committed to that goal, and (3) we will do everything in our power to support him from home as long as we possibly can.  Everyone left with their tasks of things to research or plan or decide, and we will start by returning to see our immunologist after a year-and-a-half hiatus.  As brilliant as she is, she once famously discharged Keegan from her patient load by saying, "there's something not right but not in a way that tells me what's wrong."  Unfortunately, that is nothing new to us.

The rest of the week will hopefully be a touch quieter.  Play and speech therapy on Thursday, along with a PICC line dressing change.  The mystery wound is looking very good.  We were very happy to see that after dealing with it for 7 weeks.

I have to thank you all once again for your continued prayers and support.  I wish I could put into words the strength it gives to us daily.  Right now, I need to finish getting Keegan's TPN ready and go to bed.  After a scant 45 minutes or so of sleep last night, that bed is calling my name.  I'm praying, begging, bartering, and crying for more tonight!  Here goes nothing.

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