New Ideas and Next Steps

I feel like things have been heading slowly but surely downhill.  Not for Aidan, really.  Just for me. 

As a mother, I feel like I owe him so much more than a childhood full of fear and pain and “my body isn’t working anymore.”  We are spending so much time managing today that I’m almost afraid to even think about the future – but if I don’t, who will?  And it’s a scary thought.  If at age four, we’re already managing his anxieties pharmaceutically, what will it look like at fourteen?  If at age four, his body is too tired to spend a day on his feet at the zoo or the amusement park, what will it look like at forty?  Why is it that he has the appropriate skills to run, jump, and play – but not the energy required to actually do it?

I look into his future and see nothing but the best and brightest for him. He’s amazing.  He’s brilliant and quirky and funny.  He’s sensitive and sweet, and a charming mix of silly and puzzlingly serious.  He will go to college and learn everything he ever wanted to know.  He will get a job and do fantastic things for this world.  He will meet someone who wants to spend their life figuring him out, because with him, the destination will always be worth the ride.  I know all of these things and I never, ever doubt them.

But I also know that it’s my job to get him there.  It’s my job to keep him safe.  To make sure he has a childhood as free of hurt and fear as I possibly can.  To make sure that we’ve done absolutely everything to keep that silly “not working today” body in check.  Come on, little body!  Aidan needs you!  

Amazing kid... Tired body

Over the past few months, we’ve seen new specialists who have given us new (half) answers – a genetic mutation that may or may not be causing some (but not all) of his problems.  “It is likely there is another mutation not identified.” (Read: We know, this doesn’t explain everything.  We wish we could help more.  We’re sorry.)  New meds to treat anxiety and attention deficits.  And they’re helpful, because on any given day, we are doing more or less okay - but the overall picture isn’t really improving.  We have a child who can’t eat anything.  Can’t sleep.  Requires hospitalizations far too often.  Can’t stay hydrated despite our best efforts.  Can’t regulate his blood sugar.  Can’t count on his own body to keep him going all day long.  Isn’t growing enough, despite the best nutrition we can give him.  It’s too much.  Too much all happening at once in a “healthy, normal child.”

So it’s strict food avoidance.  All feeds via J tube.  Melatonin for sleep.  More melatonin for wakefulness.  Water flushes.  More water flushes.  More water flushes.  Lots of wardrobe changes when he sweats out all of the water we’ve flushed in.  Blood sugar checks every 3 hours.  Inpatient fasting before procedures.  A special needs stroller when his legs just won’t carry him any further.  And therapy – so much therapy.  OT. PT. Speech.  Feeding.  Behavior.

We’re told that this is what well-managed looks like.  When the next problem arises, we’ll find something to address that too.  That’s how you manage a child with “lots going on.”  But, really, though?

So where do we go from here?  What do we do? 

Today, I reached out to CHOP’s Complex Care team, in hopes that they can help us.  I don’t know if they’ll take him on as a patient – I hope they do.  We need more help.  We need more answers.  We need more avenues to explore.  What is happening to this little body?  How do we make it better?  How do we make our lives better?  If he’ll never eat normally, do we keep pushing foods?  For everything we do, every decision and intervention we take, I want to know – will this make his life better?

I also reached out to another hospital (Children’s Hospital of Pittsburgh).  I have been thinking about this for a long time, but actually doing it felt like staring up at Everest while lacing up pink bunny slippers.  Is this really doable?  Am I crazy?  Maybe.  But I’m not going to stop until I’ve gotten him the best care I can.  I hadn’t considered them before because they don’t have a program for Eosinophilic Disorders, but with this new genetic finding, I am hopeful that they may be able to help us.  Glycogen Storage Diseases are among the conditions they treat in their Center for Rare Disease Therapy.

Very shortly after emailing the department, I connected with the coordinator at the Rare Disease Center today, and talked through some of Aidan’s history.  I heard five of the most encouraging words in the English language: I think we can help.  So now, I work through gathering Aidan’s medical records and hopefully planning a trip to Pittsburgh in the near(ish?) future.  They will help coordinate a place for us to stay while we’re there – there is a RMH attached to the hospital, and some hotels nearby in case the RMH is full.  The hope is that we can coordinate our visit so that we see everyone we need to see while we’re there.  Whether this would be “gathering ideas to bring back to our CHOP team” or “starting with a new team altogether” – I don’t honestly know.  But the prospect of new eyes on Aidan is encouraging.

I don’t know where this is all heading.  I do promise, though, to keep you all better updated as we figure things out and move forward.

This is the face of insatiable curiosity.  I think he gets it from Dad <3