Thursday, September 8, 2011


I apologize in advance, but this is going to be a short post.  I will try to round it out a little more tomorrow when I have a little more energy.  Just didn't want to leave y'all hanging.

Keegan's thirteenth fever started Tuesday, but the high temps (102s) didn't kick in until earlier tonight.  The team here in Boston wanted to try to switch Keegan back to oral tylenol.  We tried that when he hit 101.5 and watched his temperature sail right through it.  So, then we tried the oral ibuprofen (well, through his g-tube really, but you know what I mean).  The good news is that the ibuprofen worked - temperature down into the 98s but heart rate still high.  The bad news is that Keegan's kidneys can't handle ibuprofen on a regular basis.  While it's useful for at least letting him be comfortable and sleep for the next few hours, we probably won't be able to use it again this fever cycle.  I guess we'll take what we can get for now.

"I don't feel so great, so please get that camera out of my face, Mama."

Even though it felt at times the last few days that we were just waiting on a fever, wheels have been turning and ideas formulating.  Right now, we are trying to get Keegan scheduled for a particular motility study on Monday that may tell us if there are missing/underdeveloped/damaged nerves in his colon that could be responsible not only for his GI problems but also for the fevers.  The down side is that Monday is Keegan's fourth birthday.  Having this test then is kind of the equivalent of scheduling a colonoscopy on your 50th birthday.  The up side is that Keegan doesn't know it's his birthday or what that really means.  He will like his toys and being sung to, but other than that, he is oblivious.  If this test is "positive" for a nerve problem, there will be a difficult road ahead for Keegan involving some surgical adaptations.  If it is "negative" (and I'm way simplifying things here for convenience's sake), that puts us back at "square one", with no other ideas on how to deal with the fever and resorting to just finding Keegan's balance between TPN/tube feeds/solid food/diarrhea/growth, etc.

Again, I will try to clarify more, if I can, tomorrow.  I have a long night ahead of me, unfortunately, with Keegan's fever, so I need to sign off.  I would like to ask you to include our sweet little friend, Miss Leah Grace, in your prayers tonight.  Leah has been waiting on her angel heart for 2 years now, and today, she got the call!  She is in the OR right this very minute.  Please pray for her smooth recovery and continued health with her new heart, as well as prayers of comfort and strength for the family grieving the loss of their child tonight.  Thank you so much, friends.

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