Three days

The last two days he has been rather lethargic.  He was refusing to get out of bed in the mornings, spending most of the morning cuddled in the chair.  Last night, he was very restless and seemed uncomfortable.  By 6am, I could tell he felt kinda warm, and his respiratory rate was very high.  Since he finally had fallen asleep, I let him stay there until about 8:15am.  He had a temp of 101.9 by that time.  A quick set of vitals showed his heart rate and blood pressure were very high.  Keegan has to go to the hospital for IV antibiotics for any temperature over 100.5 degrees because he is (1) a transplant patient and (2) has a central IV line.  We called his transplant team, and they asked us to bring him to the ER at the main hospital, not the one across the street from our house.  Of course by the time we got there, his fever had magically disappeared on its own.

The ER was waiting for us, and they immediately drew a set of labs and blood cultures and put orders in for the two IV antibiotics.  His labs didn’t look terrible.  In fact, his red blood cell counts and platelets had gone up a touch.  His ANC was just barely in the normal range, which for a healthy person would be fine but indicates an infection of some kind for Keegan.  (He has a condition called congenital neutropenia, meaning he normally does not have enough infection fighter cells in his blood.  For him to get to even the bottom threshold of normal levels indicates that he is responding to something.)

Keegan was actually in a very good mood all day.  He wasn’t fussy or upset, just very chill and friendly in his ER room.  The fever stayed at bay almost the entire day without any tylenol.  However, anyone who knows him could tell something was brewing.  The child that is usually a tornado of activity only let his feet touch the ground once all day, to stand on the scale in the ER.  Around 4pm, the child who doesn’t nap anymore virtually fell asleep sitting straight up.  We got to a room on the cardiac floor around 6pm, and he was ok until around 9pm when the fever came back full force.  He finally crashed again around 11:15pm with some tylenol on board.

We are desperately praying for this to be a virus of some kind.  Keegan cannot afford to have a line infection now (well, no one ever wants a line infection but still…).  We lost his last port to an infection, and it wasn’t pretty.  It wouldn’t be as terribly scary if he wasn’t completely dependent on that line for the only thing keeping him going right now – TPN.  The blood cultures have to be negative for 48 hours, so we are here inpatient with the antibiotics going until that time.  I have to say that I’m absolutely petrified and will be consumed with guilt if his line is infected.  We won’t know for sure where it came from, but I was the last one to touch his line.  I had to reaccess his port with a new needle last night.  I keep going over it in my mind, wondering if I didn’t clean his site well enough or clean the hub long enough before hooking his TPN up.  I couldn’t handle knowing I caused him so much discomfort and threatened his well-being in that way.

The other bad part of Keegan being sick is that it delays a new course of treatment we were about to start for his GI problems.  It appears from his scope biopsies that Keegan has intestinal graft-vs-host disease.  We are waiting on some blood work to be performed to confirm the diagnosis.  We believe a similar test was run on some biopsied heart tissue back in Boston in 2009, and we are trying to get our hands on that as well.  If confirmed, this would be an extremely rare case of a complication from transplant.  We had been planning to admit Keegan for a few days next week to start a steroid pulse for treatment.  I promise that I will explain this all as best as I can in a post tomorrow.  If the steroids work, it wouldn’t necessarily improve his GI problems, but it would stop his body from attacking his intestinal tract.  Once that process is stopped, we would still likely need to travel to Boston for treatment and rehabilitation from that standpoint.

Again, I will explain it more tomorrow, but his team said today that he needs to be at least two weeks out from whatever illness he has now before we can even start the pulse.  I hate that.  To have answers and a treatment plan so close and then yanked away so quickly.  Ahhhhh!!!  Anyway, it’s super late, and I need to shut my eyes for a few minutes before the next medication is done.  I just took Keegan’s temperature and it’s come down to 99.9 finally.  Looking like a long night here.

Do I need to say how much we would appreciate your prayers for our Bug?  Probably not, but we do.  So much more than I can express in words.  Thank you again.