Saturday, May 31, 2014

We Need Negative

Early one morning last week Eli had a temperature of 100.6.  He was seen by our family doc later that morning and of course by then his temperature was normal!  The exam was normal and Eli was acting better so we just chalked it up to a short lived viral issue.  He went home, played, ate, etc in his normal fashion.  Until Thursday evening.  I thought he felt warm when he got up from his nap.  Since he had just been asleep under a blanket I waited to take his temp.  When I did take it, it was over 100.  I waited another hour and it had jumped to 101.5.

Because of his severe history with staph aureus, we have orders to get blood cultures drawn on Eli if he a) has any temperatures over 101 or b) prior to any antibiotic administration for any other illness such as ear infection or strep throat.  Our fear is not the fever itself.  It's actually nice to know that his body reacts normally and can fight infection.  The temperatures he had weren't that high either.  Normally (as a mom and a nurse) I don't treat most temperatures unless they're over 101.  Our fear with Eli having a fever is wondering what caused it?  When he had his fourth heart surgery to remove infected hardware, the surgeon was unable to remove one of the leads from Eli's pacemaker.  Some of those other leads tested positive for staph aureus.  Since then, we've lived in fear of a recurrence of staph.  If a total of twenty weeks' of antibiotic therapy in the last year haven't gotten rid of it, what will? 

So, off to the hospital we went.  Eli was again a brave little boy who had to get stuck not once but twice for blood cultures.  Two samples have to be drawn from separate sites so we can ensure one positive result isn't due to a contaminate.  This time, in addition to the blood draws he also had nasal swabs done (yes, two again) to test for a variety of viral ailments.  He tolerated both of these things very well.  There were lots of tears but he didn't fight.  That's what bothers me the most; no three year old should be so used to needles, blood draws, and swabs that he doesn't put up a physical fight.  After he was done and collected his prizes from the toy box we came home. 

We were finally able to give him some Tylenol to help bring down his fever which was hovering above 101.  He requested popcorn and even though it was waaayyy past bedtime, the four of us snuggled in bed as we watched the Reds and ate popcorn.  Eventually he fell asleep in our bed.  Bryan and Zachary slept downstairs and I stayed with Eli.  Dr. Amy wanted to examine him in he office in the morning and I thought I'd stay up and start packing in case we were looking at an admission in the near future.  But I didn't.  Instead I stared at him a lot.  I slept some.  And I prayed a lot.  How many parents can say they've begged God for their children to be diagnosed with an ear infection?  Or strep throat?  Or even pneumonia?  Yes, those things are still dangerous for Eli because of his heart condition, but not as dangerous as a recurrence of staph could be. 

Eli still had some fever through the night but by mid morning when we were at Dr. Amy's his temperature was normal.  She didn't have any results from his tests drawn the night before as those take 48 hours to complete.  Her exam did show that Eli's right eardrum was red and puffy.  That was a relief to hear.  A partial relief anyway.  We still won't rest easy until we hear that his blood cultures come back negative.  They have to come back negative. 

We're not ready to be so serious again.  Eli's strokes were only four months ago.  We've only been home from the hospital for two months.  Zachary just finished kindergarten one week ago.  Eli and I missed half of Zachary's kindergarten year because of being in the hospital.  Wednesday we were making a list of things to do this summer.  We're just starting to have fun.  Just hours before Eli's fever started Thursday, Bryan finalized plans for our summer vacation.  Eli's first real family vacation ever.  These are the issues that our family will always face.  Even when things are going well, we can never rest easy.  Congenital heart defects complicate every detail of our lives. 

Since Eli's ear did show some reason for concern, he was started on an antibiotic.  He took a good nap and had some playtime with Zachary.  Zachary had a baseball game tonight.  Eli knew Z had a game and started getting ready right along with his big brother.  He had on his baseball cap and kept asking for his shoes.  We constantly have to make decisions about whether or not Eli will go places with us.  We have to balance keeping him away from unsafe/unhealthy situations with allowing him to have normal experiences.  It's difficult.  Tonight as I was forming my opinion on whether or not he'd go, I hated the reason I decided he should go.  If his cultures are positive he'll be back in the hospital for an unknown amount of time.  And we don't know what could happen.  As a CHD family we always hope for the best but have to acknowledge the worst.  Eli went to his brother's game.  We were early and the boys chased each other on the freshly raked field.  I looked at their footprints in the infield dirt and loved that, for the moment, theirs were the only ones.  Hearing their shrieks and laughter as they ran around confirmed we made the right decision by bringing Eli.  Some may not understand that.  Some may think the best decision would be to keep him home, away from crowds and germs.  For us, it was right to bring him. 

I'm sorry I haven't updated this blog often.  Our family life is more than a full time job.  And I've had to make real efforts to take better care of myself so I can somewhat keep up with the demands.  There are so many moments, pictures, and stories I want to share here, for all of you and for us. 

Eli is sleeping beside me in our bed again as I type this.  He's such a perfect mixture of sweet, feisty, innocent, stubborn, and cuddly.   He doesn't have any fever now, but as I wrote before, the fever doesn't scare me.  Please pray that his cultures are negative.  We need negative.  Please, just let it be negative and leave my baby alone.  It's going to be a long weekend for us.