Lots of appointments to come!

Soooo, it's been a few days a while a month forever.  We've been okay, hanging in and trying to take things one day at a time.  Things are just so overwhelming right now, and writing about them is sometimes just a little more than I can handle.  But really, we are doing okay, we just have so much on our plates.

We've done some fun things in the past month - the Strides for Safe Kids walk was a good time and Aidan did surprisingly well in the crowd.  After that event, Aidan got to go to a Shopkins trading event - which was *awesome* - he did such a great job talking to the other children and asking if they wanted to trade.  No tears - I was so proud!  We also attended the Autism Awareness event at the zoo a few weekends ago, which has grown into a really nice event with great attendance and helpful networking opportunities.  I love that it's at our local zoo, which Aidan knows so well that it doesn't overwhelm him.

He's also been working hard on feeding skills, and has started feeding therapy.  It's only twice a week, and due to scheduling stupidity, it works out to 3 times every two weeks, which is only slightly better than nothing.  Luckily, he has a great team of people in his life, who continue to work with him and encourage him every day at school, and recently I happened to walk in on him actually nibbling at a rice flour pancake.  Proud mama over here!  He doesn't have much of a bite with his molars, especially on his left side, and getting anything bigger than a crumb in his mouth makes him gag - but he's getting there!  Unfortunately, his swallow is questionable and needs to be more formally evaluated for airway safety later this month, so until then, we're not working on liquids.

October brought us the tiniest bit of drama - an urgent care visit, and eventually an ER visit for a yucky stoma.  I really hate stoma problems, and we're always so lucky that his stoma is so beautiful and infection-free.  But really kind of out of nowhere, it sprouted granulation tissue that got infected and painful, and things were just no fun for a while there.  Right, as you would imagine, when I had no time to spend in the Urgent Care/ER all night long, because of course.  But I'm thanking my lucky stars that's all it was, because as I sit here writing this, I'm watching some of the babies I love from afar go through ten kinds of hell inpatient, and I know how much worse everything could be.  Aidan's been doing pretty well lately, and I don't take that for granted even for a minute.

We've had to stop Karate for now.  Aidan's little body is just too tired.  He just can't do it.  And I can't keep forcing him to do something that's just too much. 

Heis participating in soccer, which is super adorable.  Although I might be using the word "participating" loosely, since he really likes to just sit on his ball and watch once he's tired, and without 1:1 coaching, he forgets what he's doing and wanders off.  Don't care.  Adorable.  After soccer wraps up, he'll be taking a break from sports until we get his energy levels figured out, because I really think there's something awry here.  I'm hopeful that either CHOP or CHP has some ideas for us.

He's the dainty one, seated while everyone else plays.

The rest of the month is coming at us fast and furious - this week we'll see Genetics (this one's kind of a big deal, since we're looking for big answers here, or at least big ideas and a path forward) and the dentist (not a scary one for us, but a rough one for Aidan).  Next week, the Complex Care/Diagnostic Center which is another big deal for us.  I don't even really know what to expect from that visit, I just know that we need help, and we're hoping they can give it.  The following week, Aidan's swallow study, and then he's inpatient for a tube change.  Hopeful that he stays healthy and is discharged and feeling well enough for Halloween fun.

We have forwarded his records along to Pittsburgh and are awaiting word onwhen we'll be traveling.  I'm nervous - not knowing exactly when we'll go, and how I'll handle it with work, and whether it will even give us any answers - all if it makes me sick to my stomach, if I'm being honest.  But these are all the right things to do, and the right steps forward, and I just have to trust that Aidan will find answers down one of these avenues.

We'll keep you posted as appointments happen and travel plans come together.  Wish us luck!

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

Checking In...

Sometimes, so much time passes since I last wrote, I feel like I should have something monumental to say.  But I don't, so I don't say anything at all, and then you don't hear anything from us until something awful happens.

Nothing awful has happened.

We're still here, taking things one day at a time and trying to keep it all in perspective when I think it's all too much.

We finally completed a sleep study in January (dreadful) and determined that, although he wakes up at least ten thousand times every night, it's not a respiratory problem.  Obviously great news from a pulmonary perspective, though not the most helpful thing to hear from a "let's get this kid snoozin'" point of view.  But we've started using Melatonin with some success, so we're at least moving in the right direction.

Hi, I'm checking in for my Awake Study?

Sleep is for losers...

Aidan spent some time inpatient in February with a GI virus that he picked up (probably at school) and I went to a very dark place.  Parents of healthy children aren't living this life, and I hope they never have to.  (Just like *we* aren't living the lives of NICU and PICU families, or Cancer families, and hope beyond hope we never know their "normal.")  But the GI virus that sends a classmate home early one afternoon for some extra rest and fluids sends Aidan to CHOP by ambulance (inpatient for 4 days, home for 4, inpatient again for 5), leaves him on anti-emetic medication for weeks to combat constant vomiting because the virus disrupted his motility, and steals away all of the weight he'd gained since October.  And I'm so angry because it's so unfair.  But that's another topic for another day.

I'm sick, but ambulances are awesome!

A boy and his bucket

His wife will thank me for this later...

FINALLY time to go home!

We checked in again with Endocrinology when the madness that was our inpatient stay(s) wrapped up, and were pretty soundly brushed off.  Aidan has good weight gain and poor linear growth, but our endocrinologist is generally unconcerned and feels there's really nothing to be done.  At this point, her only concern for him is his Ketotic Hypoglycemia, so she's referring him over to her colleagues on the Hypoglycemia team.

March brought new focus to Aidan's Developmental concerns.  I think sometimes, it takes a really forceful nudge - just the right person saying just the right thing - to get ready to change your approach.  In our case, it was Aidan's Psychologist and his Behaviorist.  Tom and I both really respect them, and when we met for our tri-annual review, we all talked through some new things that we hadn't really discussed before.  I think this is going to lead to some different approaches to Aidan's behavioral interventions.  Stay tuned on that.

The next few months should be interesting, as always - in April, we will be seeing orthopedics to check in on Aidan's legs and feet, Developmental Pediatrics to review our new plans and services for Aidan, and he'll be heading inpatient on the 20th for his GJ change on the 21st.  In May, we head to Metabolism for the first time, and we meet with an Endocrinologist from the Hypoglycemia team.  In June, back to Developmental Peds.  And somewhere in here will be a first visit to CHOP's Genetics department, since we've only ever seen genetics once at another hospital, and everyone agrees this is something that needs to be revisited.  His case is currently under review, and we should hear back within the next few days regarding which doctor will see him and when.

In the meantime, we're doing all of the usual stuff.  Aidan's going to a new school and is doing well there, especially now that we've added full time private duty nursing (Bayada has been a huge positive addition to Aidan's team).  He's still getting lots of therapy and making amazing strides with his speech and motor delays.  He started Karate in January, and holy smack, does he ever look adorable!

More to come, soon I hope, but for now, know that we do appreciate every single time you reach out to check in.  We're still alive, and sometimes I need a little (big) nudge to dig out from under 10,000 pounds of life to return your call (text/email/attempt at actual verbal communication).

Tube Change - January 2015

January found us inpatient for a tube change (I can't believe it's already been three months!).  It's been a tough month for Aidan for a number of reasons, so I wasn't sure how this hospital visit would go, but they're certainly not optional, so off we went.

This was an important visit for Aidan.  For starters, it was his first hospital stay where he used a hospital bed instead of a crib.  Maybe it was a bigger moment for me than for him, but seeing him in that bed was such a morale-booster.  This time last year, we weren't sure he'd ever understand that he couldn't just wander out of a bed while attached to his IV pole.  The safety awareness just wasn't there.  He's made so much progress, and something like this is a real, tangible sign of that progress.  Oh, and also, glorious, glorious legroom!

Anyway, when we settled in on Tuesday night, Aidan kicked things off by having random rashes pop up that scared the crap out of me.  He was fine when we arrived, and of course (just to freak me out), they only started appearing when I started eating my (non-fish) sushi.  He didn't eat it, he didn't touch it, I didn't touch him.  But the same thing happens to him pretty frequently out in public - mall food courts, restaurants - it's hard to believe it's not food-related, you know? 

Little rash on his back - okay, no biggie...

And this thing on his chest - okay, I can see how this might show up...

Little tummy itchies, no big thing...

GAH! What happened to his face!

Oddly, we were up on 4 East, which is surgical/trauma, instead of 5 South (GI).  His paperwork was processed as a G-Tube initial placement instead of a GJ change, which was... interesting to sort out.  4 East is not my favorite place to stay - the rooms are shared, which is always kind of awkward when you have a screamer.  I hate feeling horrifyingly guilty about my kid freaking out while some other poor kid is trying to rest and recover from his hideously painful testicular torsion.

Anyway, we had the usual drama around IV placement - four fails before we finally got one in.  Aidan's gotten fantastic at sounding unspeakably sad and accusatory.  "Why did you just hurt me, doctor?"  "Please stop with the ouchies!"  After much ado, we got the IV in and fluids started.  I gave Aidan his reward - a new Chugger - even though he admitted that he "wasn't brave because he just cried and whined and said ouchie".  Still brave, kiddo.  Still brave.

Sad boy, warm flippers

Drama's over, new train on board

First thing Wednesday morning, Aidan and I went down to IR, and the real fun got started.  He coughed - I'm not even joking here - ONE TIME in the elevator, so the whole sedation plan went out the window.  No ketamine for Aidan, he was forced to remain kinda-sorta-awake/kinda-sorta-sedated.  Horrible.  He was awake and screaming (despite the versed) when I left him in the IR room, and awake and screaming when I got him back.  I'll go on ahead and assume he screamed the whole time.  Thanks for traumatizing him when that's precisely what we were trying to avoid by admitting him, fasting inpatient, and sedating him.

Before things got crazy up in IR...

 Anyway, when all was said and done, we were the proud new owners of the AMT G-JET.

He "woke up" from his "sedation" pretty hard - he screamed at everyone and everything for a few hours before finally passing out.   Poor kid.

Side note - I know they need to put leads on him, but isn't there anything that he's not allergic to?  For flip's sake, this poor kid's skin...

 Anyway, we spent the rest of Wednesday ramping up feeds, titrating down IV fluids, and checking blood sugars.  The only issue we ran into was a random low blood sugar when the nurse was a few minutes late with his formula refill.  Not even joking, we're talking 5 minutes off formula, and he ran low.  Poor kid just can't keep his sugars up on his own - which we know, but it's always kind of a crazy thing to see how fast he drops.

The team in the PACU gave Aidan a "Brave Kid" Cape and he wore it all over CHOP as he explored and recovered.  What an amazing, empowering thing - everyone he saw stopped him to gush over how excited they were to meet the bravest kid in the hospital.

 All in all, it was a good stay, and Aidan actually tolerated his feeds better than ever before.  Maybe next time, we'll be home same-day!  Which means that this little nugget will get to spend a bit more time in his own big boy bed.  Fingers crossed!

The Flu, and Farewell to 2014

Two posts in one week?  We must be inpatient...

The Great Influenza of 2014

You know, I'd just been saying to Tom that it was going to be so nice to have one nice healthy Christmas for Aidan.  So, truly, I asked for this.

It started on Saturday (12/21).  He was fine all day - he played all morning, went to Occupational Therapy and was actually fairly cooperative, went for a haircut and walked around the mall on his own feet, and then we all went grocery shopping.  Long, productive day.  So when he seemed a bit extra tired and cranky, we weren't too concerned - no nap will do that to a guy!  Things went downhill fast after bedtime - his breathing was fast and shallow, and although he was keeping his sats up around 95ish, his heart rate was high and he had a low-grade fever.  Something was brewing. Every 20 minutes, he'd wake up and cry, needing to be held and comforted back to sleep.  He complained that his tummy hurt and started gagging and retching - sure he was going to throw up (we know that he really can't, but when he's nauseous, he's so sure that he will).  

By morning, he was clearly sick.  Slumped halfheartedly in his beanbag chair, refusing to walk because "my feet hurt for walking, so carry me mommy!", feverish, lethargic, and still retching.  

I busied myself around the house, finishing up dishes and laundry and other things that needed to be done to get the house in order, while playing the "hospital or not?" game in my head.  I called Urgent Care to ask if they could do a rapid flu test - they couldn't, but advised what I already knew.  Half an hour later, we were en route to CHOP.

The ER was a madhouse - clearly, everyone ELSE in the world was ALSO sick on Christmas week, so we waited about an hour to be seen.  Aidan spent that time practicing his "If I look really sick, and super sad, will it get me more presents for Christmas?" look.  It isn't not working...

Once we got a room - and a pretty SWEET room too actually (it had an en suite bathroom!), we settled in for nine hours of who even knows what.  They did some bloodwork, suctioned him for flu/RSV testing, placed an IV (the usual drama ensued), and gave fluids and sugars.

Aidan looked suitably sad the whole time.  Eventually, he was admitted upstairs for IV fluids and sugars while he got through whatever virus was taking him down.  We'd later find out that they sent Aidan's flu swab on the slow boat to China because they didn't think flu was likely, but oh guess what, he tested positive for flu.

Anyway, once we got upstairs, (new room!  5S4) Aidan and Daddy hung out for a bit while I went down to the car to get my overnight bag, where I discovered much to my extreme dismay that I forgot a vital piece of work equipment, and I had to drive all the way home for it.  An hour each way.  At midnight.  Kill me now.  So yeah, I did that, and came back with some awesome Sofia the First action figures for Aidan from Santa.  

You might be thinking they look just like your daughter's dolls.  So close.  But not quite, because they're obviously action figures.

Anyway, uneventful night, except for all of the blood sugar testing and such, and we got the flu Dx and first dose of Tamiflu in the morning.  It must have made him pretty drowsy, because the poor kiddo was out like a light for most of the next afternoon (Monday, 12/22).

We were able to get him back up to full feed rate and no IV, despite some icky GI side effects, so this flustravaganza was only a 1.5 day affair, which might actually be an all-time record low (way to go, Aidan!).  Very happy to bring him home and spend Christmas at home and (relatively) on the mend.

So long, CHOP!  See you in 2015!

Inpatient - Endocrinology - Day 4

This post will be blessedly short.  On day 3, we felt like we had his Endocrinology stuff figured out as best we could, but true to form, Aidan's motility tanked, because why wouldn't it?  We spent one last night tucked into an impossibly tiny hospital crib up on 5 West.  Did we sleep?  Nah.  But we were together, so who needs sleep?!

Love this guy

Saturday morning found Aidan feeling much better.  The docs had given him Senna, which is what GI recommended the last time we were in.  It worked great.  After two doses, things were moving again, and we felt good enough to get a move on.

See this forlorn face?  He was sad to leave because he likes it there.

All in all, it was such a productive trip.  We learned how to better manage Aidan at home (no more breaks from feeds, no more fasting at home before procedures!).  We learned what to look out for and how to better recognize when he's in trouble with respect to his blood sugar.  Every hospital stay finds him less anxious and fearful, and more trusting of doctors and what they're doing to help him.  And, sadly, we learned not to just trust that CHOP will have the nutrition he needs.  I wish that weren't the case, but the fact is, we don't need the added stress every time we go there.  We need to start bringing our home supply.

Thank you - all of you - for all of your well-wishes and thoughts while we were at CHOP this time.  While he's not old enough to understand, I certainly am.  It means the world to me.  We are happy to be home, and even happier that we made it home in time for this year's Strides for Safe Kids Food Allergy Walk and Expo!

Inpatient - Endocrinology - Day 3 (Come for the Endo, Stay for the Gastro!)

Last night was a long one.  Since we didn't begin the IV fluids until 10pm, we couldn't start weaning the formula until then either.  So, starting at 10pm, we began weaning his formula by 14ml and checking his BG and ketones every 30 minutes.  I don't know how our poor nurse (Annie) got anything else done all night, honestly.  The feed wean went from 10pm to midnight, and his BG went from 113 to 86, ketones holding steady at 0.2.  All good.  In the next half hour, he dropped to a BG of 74 (while still on IV dextrose) and his ketones climbed a bit, reaching 0.5 (still fine).  I vaguely remember a BG of 70 at 1:30am, while we were weaning down the dextrose, and then I drifted off to sleep sometime shortly thereafter.  Kind of.  I was in and out every time Annie, bless her heart, continued to check his BG and ketones all night long.  She later told me that his ketones were slowly climbing during that time.

Annie's party ended uneventfully at shift change (7am) and Aidan was holding steady around 70.  Our morning nurse got him at critical on her very first check - 46.  When she rechecked him, he was 51, and when she sent off bloodwork for confirmation, it came back at 51.  Just a hair over "critical."  So the fast continued.  His checks at 8:30 were in the low 50's.  Then, at 9am, a new wrinkle.  BG 51, but ketones were suddenly at 3.3.  WHAT?  Where did that come from?  The 9:30 check showed BG 41, ketones 3.8 - so the fast officially ended, both for low BG and high ketones.  Things happened pretty quickly after that - the lab confirmed his BG at 41, and the first round of bloodwork went in.  He got a shot of Glucagon (a hormone that's supposed to bring up his BG quickly) at 9:45, which immediately made him nauseous, and didn't even help.  He fell down to 33 by 10:00, and they decided to halt the test and put him back on IV dextrose. 15 minutes later, on IV dextrose, he was up to 50, which is still too low, but heading in the right direction.  He spent the rest of the morning slowly working his way back up to 70 on IV dextrose.

Not a happy camper

Dr. Langdon decided to go ahead with some growth hormone labs, so those were drawn an hour after the Glucagon and every 30 minutes after that until lunchtime, when the final labs were drawn and feeds were restarted.  The results that could come back immediately came back around 4pm - it doesn't look like he has a growth hormone deficiency - or at least not one severe enough to be the cause of his hypoglycemia.  So, this means a couple of things.

1. This tells us that Aidan's form of hypoglycemia is called ketotic hypoglycemia.  This basically just means that his body doesn't tolerate fasting, and while his blood sugar falls, he produces ketones, which are no bueno. 

2. We still don't have any answers about his poor growth.  I guess we'll have to take that up with his Endocrinologist when we follow up with her in a few weeks for the rest of the bloodwork results.

The plan is to remain on 24/7 feeds, since fasting proves dangerous to him, but it's thought that with a careful wean, Aidan could probably tolerate up to 4 hours off feeds safely.  He absolutely cannot just halt feeds (you know, exactly the thing we were doing).  We've been instructed that if he's sick and not tolerating feeds for more than 2 hours, we are to take him to an Emergency Room for IV dextrose.  We have a letter explaining his condition as "severe" and giving treatment protocols for him.  It uses intentionally terrifying phrases like "seizures" and "brain damage" when explaining the consequences of untreated hypoglycemia.  Honestly, it's kind of sobering and gives a new air of fragility to an already nerve-wracking kid.

The way he acted with critically low BG and high ketones makes me concerned that his sugars are low and ketones are high from time to time at home while he's on feeds, and we're not aware, because how on earth would we even know?  His face was flushed but clammy, he was acting really tired, and he was insistent that he's "really thirsty" - which is something that he very rarely says. Except for the times that he acts exactly like that, late at night.  Or maybe he's just 3 and manipulative.  Ugh.  I hate this.


We'll be checking his BG a few times a day, and probably also overnight, with additional checks anytime he's symptomatic. I know that we are okay, and we can do this.  There's just suddenly so much more to think about.  How will we prep him for scopes?  What about tube changes?  He needs to go NPO so he can be sedated.  But now we can't safely go NPO.  What happens when his pump breaks (a-g-a-i-n) and Homecare says they'll be there in "a few hours"?  Do we wait for him to crash?  Proactively bring him in for dextrose, knowing that he'll definitely crash? 

The biggest positive is that we're told most kids grow out of this.  We get to repeat this little slumber party next year, to see if he can pass the 36 hour fast.  That seems so absurdly impossible right now.  But eventually, most kids do.

So Endocrinology is ready to release us, and we'll be going home tomorrow morning sometime.  We're spending one more night for a GI concern - his motility seems to have slowed way down and we're worried about heading home without being sure he's going to continue tolerating feeds, especially now that not tolerating feeds is not an option.

It's a good thing he's cute...