Tuesday, August 12, 2014

The Hail Mary's. . .

We've all seen them.  The dramatic end of the game play that makes it or breaks it for the team.  A desperate attempt to make the impossible possible and pull away a winner rather than a loser.

Well, we've been doing that for 20 years now with our kids.  Throwing up those Hail  Mary's and then praying.  Praying we land the basket, hit the infield or make the net.  Tomorrow is another Hail Mary.

Truth be told, I'm positive there is a God.  You know why, because the majority of our Hail Mary's have worked!  We've been faced with two impossible choices and after making one, praying it was the right one.  Whether it was leaving a DNR in place for Nettie or choosing to revoke it and push her through another life crushing infection.  Or choosing between a life taking cancer or a life taking treatment for Joshua.  Or putting our newly adopted son, Trayvon through another open heart surgery only to know transplant was not possible if it failed at that time.  And even the impossible decisions of quality now v. quality later in life.  We've had to decide whether or not to use medications in our daughter that cause neurological issues in people the longer they are on them.  Doing so would give her the chance to see life in a more stable and rage free manner but may result in life changing complications in her future.  Not doing so meant holding my daughter daily as she raged for two or more hours.  What kind of life is that.  What kind of choices are these??  Shitty vs. shittier.  That's what they are, plan and simple.  But you must make a choice and so chose we did.

Today we had to chose again.  We chose to wait for a single blood culture tomorrow morning.  The result, positive or negative, comes with risks and concerns for either outcome.  We, as a team, decided a positive means Sergio will need a new line.  That means removing this one and leaving him without one for 3 days and then praying hard we can put a new one in.  A negative means we get to go home.  But, knowing that when we turn off the antibiotics, we may be facing another life threatening infection like the one we just went through.  Both choices are crappy choices.

I know there's a God, because he's held me up as I've stood an listened to the doom and gloom of doctors for one child after another.  I know my sweet daughter that was to be is smiling down from Heaven, happy and whole.  I know God has my back and though bad things happen, I also know he's not making them happen.  He's pulling us through the shortcomings of this life.  He loves Sergio and doesn't want him to suffer but that's the world we live in, the answers just aren't here yet.  So he'll hold me up as we make choices to give my precious boy both quality and quantity and wait for the "answers" to come.

Nettie has proven that we've made some good choices.  I signed two DNR's (Do Not Resuscitate) orders for my baby girl.  Each time they were to be activated, I look at her and just knew it wasn't the right time.  She'd give us the signal she's ready to go, it wasn't my call to make.  The same for Joshua.  Despite the grim statistics and the side effects of the meds, and the life long disabilities that may occur or the chance he may need to battle another cancer caused by the treatment of the first. . . once the info was shared, we told the Dr. we'd only accept positive reports from that day forward.  We were going to live like it was all going to work and he was going to survive.  If we had to face another potential outcome, we'd cross that bridge when it appeared.   And Trayvon, we decided it was the wrong time to move to transplant, despite the misgivings of the transplant team.  We had hard decisions to make, and harder ones to live with if we were wrong.  In all of these cases we were right.

Our luck, time, whatever will run out one day.  We'll be faced with such an impossible Hail Mary it won't be realistic to hope for success.   Until then though, I think we'll just keep throwing them up and praying they're going where they need to be to make us a winner and not a loser.  I just hope God isn't keeping score.  :-)

With love,


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.