Update: April 4th Scope & Biopsies

A few weeks ago, Aidan had his second scope.  The first scope took place on December 14th and showed lots of eosinophils in his esophagus and colon.  We were hoping for better this time.  Aidan had been almost entirely elemental for the past seven months (minus one very very sad rice trial), so hopes were high.

The morning began with a very early wakeup.  I packed a sleepy, confused baby bug into the car, tucked him in with his blankets, and hoped that he fell back asleep (nope).  We arrived just as CHOP Exton opened - we were the first patients in the door that morning.  We were taken directly back to the pre-op waiting room, where Aidan changed into his CHOP jammies and we played.

As nerves began to set in (mine, not his!), I gave Aidan his beloved balloon (Ballooney!) and his beloved Tubie Friend (Toby!) and we waited to be called back.  We didn't have long to wait - Dr. Liacouras starts his day bright and early.

We soon found ourselves in the back, having vitals taken and being chatted up by the anesthesiologist.  We argued back and forth for a while about whether Aidan was well enough for the procedure - ultimately we agreed that he was - and were finally given the all-clear for the Versed.  Versed is the happy juice that children at CHOP get before a procedure.  It makes them a little silly, a little sleepy, and totally willing and happy to wave bye bye to mommy and be taken off to places unknown with a strange nurse.

Aidan went from happy to sleepy to zoned out to almost totally asleep within about ten minutes.

Around this time, the nurses told me that they were ready to take him back.  I was left in the pre-op waiting room, thinking about him and hoping that things went well.  He was in excellent hands, I know, but it's always a bit nerve-wracking to see your child put under anesthesia.

Less than thirty minutes later, Dr. Liacouras came out to let me know that he did wonderfully.  Things were visually "beautiful" and we'd have more results in about a week.

A few minutes later, I was brought back to see my sleeping beauty, who took his time waking up and didn't exactly come out of it smiling.  Waking up from surgery is always tough, isn't it?

I have so much love and affection to the nurses at Exton.  They treat us as though we're the only patient there that day (which is FAR from the case).  By the time Aidan left, he was all smiles and flirts.  Toby Tubie was feeling pretty good too :)

Several days later, we got the call from Dr. Liacouras.  Somehow, we've made the right decisions, because HIS SCOPE WAS NORMAL!!!  What this means for us is that now we know that he has the ability to feel good.  We have a good baseline for our future food trials.  This is really exciting news!!!

What's in A Diaper Bag...

This week's Toddle Along Tues(Wednes)day topic is What's in your diaper bag?

My disclaimer?  This doesn't include all of the new things I now carry around for tube feeding.  I wasn't really ready to think about that yet.

The bag: Skip Hop Duo - I love it!  I've had many, many diaper bags (like most moms) and this is the one I always return to.  Later iterations of this bag have replaced one of the mesh pockets with a cell phone holder - I'm super glad I have this version, because I like to stuff bottles and sippies in there!

The Contents: We travel pretty light.  Feeding tube accessories are a suitcase all their own, so I try to keep it to the essentials here.

- Wipes (We like Huggies, but Pampers Thick Care will work if they're on sale)
- 3 Diapers (Pampers Baby Dry, Size 3)
- 3 Bottles (Tommee Tippee, pre-filled with water and a container of Neocate Jr. formula)
- 2 Epi Pens (you never know!)
- Mommy's inhaler
- Baby Tylenol (generic.  Tylenalmost?)
- Toy Bag (containing board book/flip cards, rattles, C-3PO, and a "don't touch my baby" tag)
 
These have been our go-to items for months now.  Aidan normally carries around his pacifier (usually a Wubbanub) and his blanky (Aden & Anais Issie), so I have no need to pack a spare.  I just toss my wallet into the bag and off we go!

Conspicuously missing?  A change (or ten) of clothes, which will now be standard fare since we're the owners of a very leaky feeding tube!

Update: April 11th - Allergy

Lately, Aidan's been coming home with swollen, red, suspiciously hive-like cheeks.  My first inclination was to blame daycare (sorry guys).  Clearly, he MUST be licking crumbs off the ground/having a yogurt facial/juggling peas when no one's looking.  CLEARLY.

As the days turned into weeks, and he was coming home the same way every day, I began to doubt the conclusions we had drawn.  Was it likely that daycare was slipping up every single day?  No, probably not.  So what then?

We decided to visit Dr. Fogg, our friendly neighborhood allergist.  He's not who we see for EGID issues, but he takes care of my allergies and asthma, and he's involved in Aidan's care too.  We really like him, and it's nice to have a local (read: non-CHOP) resource who can make the time to call you back!  I digress...

Dr. Fogg's nurse was hesitant to order environmental testing on a child so young (15m) but I insisted.  I know it's allergies.  I just know.

So April 11th came, and we found ourselves in Dr. Fogg's office for a skin test.  48 skin pricks on one teeny tiny back.  Aidan cried like it was his job when they were being applied, but a hug and a bottle (and the ability to back himself into a corner to protect his back) calmed him down. I won't lie though - watching your 1 year old cower is pretty heartbreaking...

And then we wait.  A few minutes pass, and his back is getting pretty red:

A few more minutes...  Even redder.

A few more minutes, and welts start coming up...

By the time we reach the ten minute mark, it's insane.  Clearly, this boy has some environmentals in play. 

The results?  Allergies to grasses, trees, dust mites, roaches, and weeds.  No pet allergies!!!  No mold allergies!!!

The treatment?  We've started him on zyrtec (3/4tsp) nightly and his daily hives are gone.  His ever-present runny nose?  Gone.  Amazing.

We've also been asked to consider allergy shots.  Although Aidan's younger than the rest of their injection patients, Dr. Fogg feels that it would be a huge benefit to him.  We're considering it and will make the call in a few weeks, once we're done with the move.


For the record - here's a picture of my environmental panel.  Weird, IDK where he gets it from...

Picture Post

I'm sorry my words have failed me this week.  I mentioned last week that we had made some big decisions around Aidan's feeding and nutrition, and we knew it would be a difficult transition.  To say that it has been would be an understatement.  I've needed a little bit of time to process things for myself and haven't felt the urge to write anything.  We'll be back to our regularly scheduled programming next week, but for now, I'll leave you with this...

(Big thanks go out to Tubie Friends, who you'll hear more about very soon.)

What do you mean I brought the wrong kid to school?

Rockin' It...

This kid has a thing or two to tell us about being comfortable in your own skin.  Truly the most confident, carefree child I know.

Inner Thoughts on Tube Day

I've been singing Jekyll & Hyde to myself for weeks now, having seen that it's coming to Philly later this year.  And today's Tube Day festivities made it seem all the more apt.  My inner thoughts today:

Now there is no choice:
I must put aside
The fears I feel inside...
There's no place to hide!

 No place to hide, indeed.  We've made the decision and it's time to go.  No turning back now.  Too afraid isn't an option.  We're doing this thing...

So it comes to this:
One great golden chance
That only I can take,
When everything I fought for
Is at stake!...
To make the mark
That only I can make!

We are so unspeakably fortunate to have the chance to do this for him.  It's been a rough, rough road.  And there's a rough road ahead, to be sure.  But I've fought to get him here and I'll see him through this.

Now the die is cast!
Nothing left to do...
Time alone can prove

 My theories true... 

It's done.  Now we wait to see if it helps.  I believe that it will.  I have to believe it. 

Decisions Made: The Tube

A quick update, because life has really had a nasty habit of getting in the way this week, but an important update really shouldn't be forgotten.

After months of waffling (and not the Belgian kind) we've finally come to the Tube decision point.  Despite our most heroic efforts, Aidan just isn't growing well enough on his own.  My 15 1/2 month old boy wears 6-9 month clothing.  It's time to do something.  It's been time for quite some time.

The process begins with a call from the CPED coordinator, Michelle.  (CPED = Center for Pediatric Eosinophilic Disorders - CHOP's EGID clinic downtown)  Michelle and I discuss our options and I let her know that we're ready to try the tube.  She tells me that a case manager will be in touch.  We wait.  A week later, I call back.  No one has been in touch.  Please, help us.  Please?  We wait.  Days pass, I'm anxious and impatient, but finally the phone rings.

We have a case manager, and her name is Gina.  She and I talk at length about what we're doing and what will happen next.  She is going to work with our insurance and let us know how far in the hole we will be going to feed our son.  We don't even care anymore.  We just want this to happen.  We are told to wait for her call.  "Tomorrow" she says.

Days pass.  No call.  Still anxious, still impatient.  Once again, finally, the phone rings.  It's the Connelly Center downtown.  They do tube training, and they want to schedule ours.

So it's scheduled.  This Saturday, 4/14.  We'll leave this house with a boy, but we'll bring home a Super Tubie.  We're nervous, but we're confident that this is the right decision.

This graphic comes to me from the Feeding Tube Awareness Foundation.  I think it's beautiful.

I am Thankful...

I post a lot about how we struggle and how I despair.  How I hope for a cure and hate that there isn't one.  Rarely do I remember to step back and give thanks (to whoever, whatever is meaningful in the moment.).  I'd like to take a moment to do that now.

I am thankful - so, so very thankful - for the little boy that Tom and I brought into the world.  I am thankful for his strong little body - which has been through so much and continues to carry him where he wants to go.  I am thankful for his beautiful smile and his joyful laugh, which have been untempered by the unfairness of everything going on around him.  I'm thankful for his brilliant mind and his quirky sense of humor, which make him the clever little ninja that we know and love.  But more than all of these things, I am thankful for his spirit.

Aidan is easygoing.  He's laid back and calm.  He's adaptable to anything.  "We need to wake up at 4am to get you ready for surgery, Aidan."  Okay Mommy, I can do that.  "We need to go to bed at 6:15, because Mommy and Daddy have lots of work to do tonight."  Sure Mommy, no problem!  "We need to stay up until 11pm, even though bedtime was five hours ago, because Mommy needs some adult interaction with Teddy's Mommy."  No problemo, Mama!  I'll be a nice, quiet, happy boy.

Part of being a Shields is adapting to everything thrown at us.  No one does this better than Aidan.  His easy acceptance of What needs to be done today makes everything possible.  More than possible.  Worthwhile.

Thank you, beautiful boy.  Thank you for sharing the light inside you.  Thank you for making every room you toddle into brighter.  Thank you for making this life worth living.

Anderson Cooper - "The Boy Who Cannot Eat"

I am always excited to see word getting out.  EGIDs get so little press time, which seems unfair given how BIG this is in the lives of those affected.

This is why I was thrilled to hear that Anderson Cooper was going to show a segment on EoE.  The Koscinski family joined Anderson on stage and talked through what it's like to live with EoE.  Admittedly, their son is a very severe case - but honestly - I saw so much of our own family in that piece.

Like Joshua Koscinski, Aidan has begun to react to airborne allergens released during cooking.  Like Joshua, Aidan is unable to eat at all (in fact Joshua has one safe food - baby food applesauce - to Aidan's zero).  Like Joshua's mother, I am plagued by the daily fear that someone will be just a little too lenient with a food that he's anaphylactic to.

But what I took from this clip was that I CAN do this, I WILL do this, and Aidan will be as strong and happy as those boys.

Here's a link to the Anderson clip - I hope to see the full segment online soon!

Three Weeks In & Beyond - Steroid Treatment

We have called it quits on the steroid treatment.  We'll write this one up as a partial success/partial failure.



The successes:
- Aidan's gained more weight in three weeks on the steroid than he has in the past several months on his own.  He now tips the scales at 19lb 1oz.
- Aidan seems to be eating a bit more on his own that he ever did before the steroid.
- Now that the meds are gone, he sleeps again (I can't stress enough how awesome this particular success is)!




The failure:
- Once we discontinued the medication, Aidan's super appetite waned.  He does still have "good days" (20-25 oz) but there are more and more "bad days" (15 oz).
- Continuing the medication was not an option.  The side effects are more than we can live with.

 
It's time to make some tough decisions.  It's time to do something. We'll have a new path forward, very soon.