Monday, April 29, 2013

No news is good news...

I haven't written in a while.  I thought it was because I had nothing good to say, but I realized last night that it's really because I had nothing bad to say.  Things are pretty stable - we're just treading water until Aidan's next procedure - scopes (upper & lower) with biopsies on May 15th, as long as we can get and keep him healthy by/until then.

On the feeding front - he's on 18 hours of continuous feeding, which translates to something like 8am to 5pm, and then bedtime to wakeup.  So he gets an hour or two off the backpack in the evening, which he really enjoys.  We're feeding Elecare - and (knock on wood) he seems to have leveled out a bit on that too - so maybe he just needed to adjust?  I don't really know, but I do have some hope that this scope will go well.  It's nice to have hope - because whether I'm hopeful or hopeless, the outcome will be the same.  It's nice to have hope.

On the care front, I don't think I've mentioned this, but Megan is moving on.  It's not surprising to any of us, but Aidan obviously has no idea.  He's going to miss her and the girls - a lot - but they are doing what's right for them and we support that.  We don't know yet what we're going to be doing with Aidan - I think having a nanny was the difference between keeping my job and losing it during this last hospitalization - but we'll find the right answer.

What we're running into is that the larger daycare centers are unable to do anything with Aidan's tube due to their corporate regulations.  The smaller (non-center) daycares are willing to learn but don't all give me the same "competent" feeling.  Bringing in a nanny (not a live-in) is also an option.  We are just checking out the daycares in our area first, because I really like the idea of his being with his peers instead of at home alone with a nanny.  He's doing so well with Teddy and Chase that it breaks my little heart to realize he won't have them after June.

This scrumptious little pigpile is Aidan's little piece of Heaven

We are also waiting to get a Social Worker assigned to us to help us figure this all out.  I don't know what kind of help he/we qualify for, but they may have more ideas than we do.  It's all up in the air right now but I trust that we'll land on a solution.

Friday, April 12, 2013

April 5th - Visit to CHOP Exton

It was a really underwhelming visit to CHOP Exton.

We got Aidan's latest Stats, which were - you guessed it - underwhelming:

Weight - 10.801kg - 23lb 13oz - 3.4%
Height - .816m - 32" - 1.3%
Head - 47.5cm - 18.7" - 15.7%

And then we spoke with Dr. Liacouras about where we are and what to do next.  Since Dr. L is a bullet-point kind of guy, I'll give you a bullet-point kind of update.

  • J feeds are generally being tolerated well.  We will step up to goal of 60mL/hr over 18h. 
  • We do not know whether or not Elecare is causing Aidan problems.  We cannot know this until we scope.  Behavior suggests that Elecare is not well-tolerated, but scope is
  • We agree that we should scope as soon as safely possible.
  • Dr. Liacouras will check in with Anesthesia to determine how soon after hMPV we can scope Aidan.
  • We will call Dr. Liacouras's office this week to update them on Aidan's progress with J Feeds.

As far as how we're doing - it's really hard to say.  Mostly he's doing well - he's not throwing up (he's nearly physically incapable with the placement of the GJ Tube.  But he's still struggling with symptoms that leave me wondering whether this formula is the best thing for him.  He's awake a lot at night, growling and grunting and crying.  He's extremely emotional - which is either a symptom of being a toddler, or a symptom of a reaction.  We just don't know :( 


Update  - 4/12

Things are pretty much the same, except that Aidan seems to be over the cough and runny nose - so I've been pushing Liacouras harder to order the scope.  I finally heard this morning that the orders are in, so now we just wait to hear from the scheduling department (I should hear by Monday or Tuesday) and hope that he passes muster with anesthesia.

Thursday, April 4, 2013

Day 6 & Day 7 - Tube Surgery & Going Home!

Day 6 -

Just after midnight, Aidan was taken off Elecare feeds and placed on IV feeds.  Our nurse until 7am was Kelly, and she was really sweet to Aidan.  Most everyone has been really sweet to him, even though he's a pretty atrocious patient.  Nights are so hard because I stay up until they're done messing with him (for the most part), which is around midnight, but then I try to rush to sleep so I can get up and work in the morning.  It will be glorious to get through this week and SLEEP this weekend.  Please cooperate, weekend.

The overnight hours were more or less uneventful, minus one or two wakeups for IV checks and vitals.  Aidan is pretty spent so he's getting back to sleep pretty easily right now.  The day started around seven when Megan got here and the nurses started getting Aidan's vitals recorded and getting him prepped for his procedure.

8:30: we got word that Aidan would be going in for surgery early.  9am!
8:40: we were told that IR is refusing to do the procedure with Versed.  They are requiring more sedation.  But anesthesia doesn't feel comfortable putting him under.  Soooo, now we wait.
8:50" Our Nurse (Heather) is walking us down to Sedation herself, to see what's what.
9:00: Sedation examines Aidan and declares that he's too slimy for any sedation beyond Versed.
9:30: Versed and Tylenol are given to a 100% asleep Aidan, and some numbing jelly is put onto his stoma in case it needs to be dilated.
10:00: Off he goes to surgery.  We are assured it will take "2.5 seconds"
11:00: Longest 2.5 seconds EVER
11:15: He's back!  He woke up halfway through and apparently seriously disliked his nurse's singing.

So we're the proud new owners of a MIC-KEY Low Profile Transgastric-Jejunal Feeding Tube.  We'll go ahead and call it a GJ.  I don't know why they went with the MIC instead of the AMT - I've heard really good things about AMT's new GJ product (GJet) but I've also heard that it's not widely available.

The rest of the day was really just hanging out, napping, watching how he tolerated feeds, and waiting to see what would happen.  The highlight was that Grandma Pat and Grandpa Paul came to visit. - it's a preposterously long drive for them so we really appreciated that they came!

Day 7 - I had to wake up early and leave my little man in the hospital - AGAIN. I *hate* doing that, and it always makes me question my priorities, but in this case it was the right thing to do - he's doing fine, I need to be at work, and the plan was to return after work to discharge him.  Once again, he refused to be clothed all day.  Mommy's little nudist.

The day passed without much drama - he's tolerating his feeds pretty well except that he has bad diarrhea and it's blistering his skin. Weight is at 11kg.  24.2lb.  Moo!

I hate how exhausted he looks here.  He's so ready to go home...

I got back to CHOP around 5pm and spoke with his doctors and FINALLY signed his discharge paperwork.  WOOHOO!  I wasn't even done packing up the room before Aidan was out the door.

Smell ya later, CHOP!

So we're home.  Finally home!  We'll be returning to CHOP @ Exton on Friday 4/5 to consult with GI and hopefully to establish a Scope date so we can plan how to go forward with the formula.  Aidan is on feeds 24h per day right now, but over the next several days we'll be looking to step him up to a 20h plan, and then an 18 hour plan.  I just need to figure out what makes sense in terms of when to have him on feeds and when to have him off.

I'll keep you all posted after our visit to Dr. L on Friday!  Thank you all so much for your support this past week (and always!).  Aidan is a lucky little boy to have so much love in his life!

Monday, April 1, 2013

Day 5 - Waiting, Waiting, Waiting

Day 5 - Still inpatient, although he's getting better.  He wants to run and play and stop being poked and prodded.  I miss sleeping in my own bed and using bath towels that are large enough to cover all of my lady areas.  So we all want to go home, we just want to make sure it's happening the right way.  With a plan to move forward and get him healthy.

After last night's IV drama, we knew that there would be no procedure if they couldn't get an IV in.  So Aidan spent the morning with hot packs on his arms, trying to draw out a vein.  It must have done the trick, because little man's now sporting a brand new IV in his right hand.  Unfortunate for him since he's a righty, but his coloring isn't suffering too much.

So today's plan - Elecare until midnight, then IV fluids in preparation for a 9:30 procedure with Interventional Radiology.

Thoughts on the Elecare: He's not throwing it up right now.  Which is half great, half frustrating.  Great, because who wants their kid to be a miserable vomity mess?  But frustrating, because I know what we've been living, and it has predated this virus by weeks.  And he's exhibiting the symptoms that cause the most fighting between Mom and Dad.  It's always the subtle symptoms that no one knows what to do with.  Is Dad underreacting?  Is Mom blaming too much on Allergic Reaction and not enough on Toddlerhood?  We never really know.

I guess this is why I'm so adamant that we scope ASAP.  Even if he's not vomiting Elecare anymore, I truly believe that he's not okay.  He keeps having allergy cheeks, and more disturbingly, he's having insane mood swings where he'll go from laughing and playing to hitting his head against the crib bars and biting his hands in mere minutes.  I know my little boy, and this isn't him.  We can do better for him.  We have to!

Weight is up to 10.25kg (I THINK?  Tom didn't write it down and I was at work today when he was weighed).  It's so wonderful to see him putting weight back on.

There are some concerns that he may be too small for the GJ tube that is normally used.  I didn't get clear details on this, because I wasn't around for the conversation, but I definitely will ask more questions tomorrow.

Thank you - all of you - for following our story and wishing us so well.  All of the support is so meaningful to us.