Updates - Complex Care, Rare Care, and Besties

It's been a better week.  I feel like I've accomplished more, anyway.  I've made strides toward getting Aidan where he needs to be.

The Diagnostic and Complex Care Team reviewed Aidan's chart and called to set up his consult with Dr. Magnusson.  I don't know whether this means it's a visit to decide whether they'll take Aidan on, or it's the first step in the process of having Dr. Magnusson on our side.  Either way, it's a step in the direction we so desperately need, and it isn't even that far off (October 23rd).  I've heard truly amazing things about this doctor - that he's amazing to have on your side, that he's smart and he'll fight for you, get you what you need, and put you in your place when need be.  All of that and more - and we need it all so badly.  I'm looking forward to the appointment, but I also know that I need to seriously organize my thoughts before then.  I need to be armed with a clear and concise history and how and where we need his help.

I've also been continuing to talk with Children's Hospital of Pittsburgh's Center for Rare Disease Therapy (Rare Care).  I am working with CHOP to gather Aidan's medical records, and once I have them and can get them to Rare Care, we'll be able to figure out exactly which doctors Aidan needs to see there.  I've faxed the requests over to CHOP's records department, so now I wait.  I have no idea how long it will take for CHOP to gather and mail his records to me.  I'm oddly curious to see them, actually.  But mostly, I'm anxious to get them to Rare Care so we can get the ball rolling.  They have appointments available in November, but think that if we can get his records over quickly, they may be able to squeeze him in sooner.  November would be great.  Sooner would be amazing.

All of this is so much more direction than we had even two weeks ago.

On the home front, sleep has been hard to come by this week. I think Aidan's been sleeping more restlessly than usual - we've had two accidental unhookings overnight, and when we check on him overnight, he seems especially entangled lately.  A few nights ago, we were all awoken at 4:30am to a low blood sugar, high ketone boy.  He was cold and clammy and had been vomiting repeatedly in bed - all because his extension popped out and we fed the bed.  Totally commonplace in the feeding tube world, but very dangerous for a hypoglycemic kiddo.

This has to be a strangulation hazard - right?

On a fun note - Aidan got to spend time with his bestie over the weekend.  It will never stop warming my heart to see him just get to be a little boy.  These boys have so much to teach each other.  I love that T pushes Aidan to try bigger, braver, better things. I love that Aidan shows T that it's okay for everyone to do things in their own time, at their own speed.  I love that they can both learn how to meet a friend where he is, even if that's not where you are.  T is a sweet boy with a sensitive heart who has loved Aidan like a brother since birth.  We are so lucky to know him.

Best Friends go with it when you rename their clubhouse "The Charmed House"

He also (creative boy!) had a great time making a robot that could do all of his smiling for him.  Maybe I've been irritating him too much, asking him to smile for pictures?  He was so proud of his robot's big smile, and said that now HE doesn't have to smile.  Great problem-solving, little Vulcan.  So proud :)

All in all, it's been a better week.  Over the next week, I'm hoping for more communication with Rare Care, a special Mommy/Aidan date on Labor Day, and my first time at a special needs parent support group - something that's been FAR TOO LONG in coming.

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

All Of The Unfair - and why it's okay for me to whine about it sometimes

Sometimes, life is unfair.

It's the kind of thing you tell your kid when he so desperately wants that new toy, or so desperately wants not to eat that broccoli.  You're the adult, and you know that he can't have exactly what he wants, exactly when he wants it.  Life gets in the way, you need to buy groceries instead of toys, and you need to eat broccoli to grow big and strong.  Sometimes, life is unfair.


Picture, if you will, a little boy who loves Chuggington Trains.  He loves them more than almost anything.  I'd never ask him to choose between Mommy and Chuggingon Trains, because frankly, I don't think I'm emotionally prepared for his response.  Chuggington is so immediately loveable for him, because the songs are easily memorized (ah, familiarity), the characters are clear and concise as they describe their thoughts and feelings (nothing ruins a good show faster than having no clue what's going on!), and the toys look just exactly like the trains on TV (there's our good friend familiarity again).  Other little boys seem to like playing with them too, whether they're Chuggington fans or not, so they're a pretty universal social uniter.  Aaaaand, the show doesn't make me want to insert ice pick A into brain stem B, like Thomas the Train does.  Really, Chuggington for President.  I digress.

So there's a little boy who loves Chuggington, more than almost anything.  As a special Christmas gift surprise, he got tickets to see Chuggington Live on stage with his Mommy.  It was going to be a really special big boy Mommy/Aidan day, and since Mommy's not insane, Aidan wasn't told of the surprise until the day of.  But boy, was he excited!  Big, real Chuggers!  No way!  Let's go!!!

Now picture, if you will, that little boy starting to feel sick.  The drive to Chuggington is long, and as time goes by, the little boy feels sicker.  By the time he arrives at the show, the sad truth is obvious.  There isn't going to be any Chuggington today.  There's just going to be a 75 minute drive to the Emergency Room, where he'll be poked and prodded while nervously asking if he can go see those Big Real Chuggers yet.

Then, he'll go home, and get sicker.  The next day, he'll go to the doctor, who will send him back to the hospital in a big, scary Ambulance.  This isn't Big Real Chuggers, Mommy.  I know, Baby.  I'm so sorry. More poking, more prodding.  X-Rays, IV's, no sleep (we didn't even get admitted up into a room until 8am!), and certainly no Big Real Chuggers.


And I get it.  Really, I understand.  Life isn't fair.  I know how to say all of the right things to Aidan, to make him understand, and to help keep him from being an angry and entitled little urchin.  But here's the thing - who's going to come explain it to me?

Because It isn't fair that catching some plain old run-of-the-mill virus sends him to the hospital, and other kids wipe their noses on their sleeves and get on with their lives.

It isn't fair that everyone is signing up to bring candy, juice, and cupcakes to this week's school party, but all my kid wants is to hug a banana.  "I won't eat it, Mommy.  I promise.  I just want to hug it.  Please?  I love that yellow guy so much."

It isn't fair that everything that happens to him forces me to doubt whether I can care for my own child at home.  While other parents wonder if if their kid is too sick for school or healthy enough to throw at the wall/hope it sticks, my brain is overflowing with phrases like feed intolerance, elevated ketones, hypoglycemia, dysmotility, and direct admit.


It isn't fair that my kid *just knows* that he wants the IV supply cart removed from his ER room before he'll set foot in there.  Or that he chastises his nurses for using sanitizer instead of soap and water.  Or that he requests specific toys from the floor's playroom, because he knows they're there.  It isn't fair that all of this is so normal to him.

It isn't fair that he gets a cup of water and a spoon at the ice cream shop, while everyone else gets ice cream.  "Don't worry mommy, I can just pretend it's ice cream, because I love it!"

None of this is fair.  He deserves so much better than he gets.  He doesn't really know how unfair any of it is - not yet, anyway.  He knows that his life is pretty great, and that he's loved, and that he's safe.  He knows that he has everything he could ever need, and most things things he's ever wanted.  Unfair, to him, is bedtime when he'd rather it was TV time, going home instead of going to Target, and mom meaning No when she says No.

So I know, these are all my thoughts, and not his.  But you know what?  That's okay.  It's okay for me to hate the cards he was dealt sometimes.  It's okay to say "How am I today?  Not so good...  This day is not so good at all..."  There's no special trophy for pretending everything's just wonderful all the time.  My little boy is brave, and and he's tough, but he shouldn't have to be - and it's A-OK for me to feel that way today..