Monday, August 11, 2014

How Hot Can You Get???

Even at 106.1 he was trying to smile in the ER.
That was the question Sergio decided he was going to try and answer for us Friday evening.  Now, this child has gotten "hot" before, up to 106.5 and I don't really even bat an eyelash, as long as he's getting the medical intervention he needs. . . but, Friday was a different story. We landed in the ER at 3:00 am due to a fever that was moving rapidly and he was looking very sick, very fast.  It earned him a trip to the PICU.  During the day the docs and nurses kept saying how good he looked, despite the fact that I kept saying it was highly abnormal for him to sleep all day and his heart rate was very high for him.  At 7:10 pm he decided to see how hot he could get. 

He had just reached 107.3
107.3.  That's how hot he can get.  I pray that's the hottest he ever gets again.  It was the highest temp of the new PICU, where we were thank God when he pulled this little stunt, but not the highest of the hospital.  The record was 108.1 for a little girl with a massive abscess in her abdomen.  They drained it and immediately she recovered and was on her way.  That's impressive.  Sergio's wasn't so easy. He shook harder than any seizure I've witnessed.  He cried out in agony as his body was violently put through a temperature change of over 8 degrees in less than 15 minutes.  He turned purple as the blood vessels clamped down to preserve his organs and his heart rate sky rocketed to over 200 beats a minute.  Yea, he spooked a few diehards in the PICU Friday; including me.

 It's the line again.  That damn, lifesaving, life giving, and potentially life taking line; the one that feeds him because his gut just refuses to work for some unknown reason.  The line that keeps him growing, thriving, hydrated, and fed.  Pair that line with a gut that is full of bacteria, as we all are, and a gut that likes to just share those bacteria with his blood stream, again for some unknown reason, and you have disaster.  These disasters happen about once a month again.  We do get breaks (the longest one was 18 months!) where he stays infection free, and then bam!!  We get stuck in this vicious cycle that is trying the best of the docs here. . . and me.  

I consider myself a pretty good problem solver.  I like murder mysteries and often solve the "mystery" of a movie before the end. I like games like Words with Friends, because they make me think and I love my medical apps that give me a case and I have to solve it (I've gotten pretty good too LOL - thinking of charging $20 for advice at this point!).  But I've lived with a walking, breathing, strong headed medical mystery now for over 6 years and I can't figure the answers out.  That's a kick in the gut. I can solve random crap but not the one that really counts.  

Sergio can't talk.  But he can communicate beautifully.  Sergio is smart, but he'll make you think otherwise if it means you'll ask him to do less. He'll play smart if it benefits him to do so.  Sergio can read (not at grade level, but can read words), he can spell, he can count he can problem solve and is incredibly resourceful in devising ways of getting to his water sources.  He is sly and creative and is his own favorite comedian (he literally will sit in his bed and crack himself up with evil little thoughts! LOL)  He is an integral part of our family.  The nurses that care for him in our home, love him like he was one of their own. 
Two days after his little fever fest.
The nurses in the hospital argue over who will have him to care for.  Why do I say all this. . . because he’s worth the fight.  He’s worth the time, energy and mental anguish to pull him through these awful infections again and again.  I often look at Sergio and think; “Do the doctors see what I see, and do they think we should fight as hard as we do?”  I never let my mind think the unthinkable, that maybe just maybe, this disabled little boy isn't work the money or time.  But, their actions speak louder than my worries.  They fight like hell to keep him going as I fight like hell right along with them.  The doctors have pained looks on their face each time we have to talk about replacing a line, or what to do with this severe infection or how do we keep this from happening.  They just don’t know either.

So in the end, the mystery stays just that, a mystery.  My little spit fire who loves his naked, backless potato heads (preferably in water).  My naughty little man who sticks his tongue out at everyone now because he knows it gets a rise out of virtually anyone that works with him.  My mystery man who has mastered the best primal growl you’ll ever hear from a human when he doesn't like the outcome of a plan he had devised.  And as everyone knows, a mystery is just waiting to be solved and so I will. . . hopefully it will be in time.  


  1. he is a special little boy indeed, he makes me smile everytime i see him i love my hugs and when he plays with my chin and especially his couple of words i heard him say at hancocks lol he is in my prayers as all of you are love you all xoxo

  2. Sergio is Gods special angel! God allowed him to be born, gave him to the "perfect" family. Knowing he would be loved and cared for. What a wonderful witness for God and others of unconditional love. God Bless this beautiful family...