Thursday, May 31, 2012

Decisions Made: G-Tube

It will probably come as little surprise that we've chosen to move past the NG Tube.  We've struggled with it, and although it's ultimately been fairly successful, life is very difficult with it.  Since this road isn't likely to be a short one, we've decided to move forward with the placement of a G-Tube.

As usual, I turn to Feeding Tube Awareness for a better understanding of what we're getting ourselves into.


G (Gastric) Tube: A G-tube is surgically placed directly into the stomach. Some hospitals will place a PEG tube initially to form the stoma (2-3 months) and then transition over to a button g-tube. 

Pros:
  1. More comfortable than an NG, because there is no tape on the face
  2. More discreet than an NG - if a Child isn't feeding, no one would know he's a tubie!
  3. Longer-Lasting than an NG - buttons can last up to 3 months, whereas NG tubes must be changed monthly.
Cons:
  1. Requires a surgical procedure to place the G Tube.
  2. G Tubes need to be "vented" - a video is worth a thousand words... 
  3. G Tubes can clog (just like NG Tubes)
  4. Granulation Tissue can form around the Stoma

Our Procedure:
 Aidan's surgery is taking place at CHOP downtown today, May 31st.  Aidan will be put under general anesthesia, and the Interventional Radiology team will use ultrasounds and x-rays to find the exact right spot for his new tube.  It will be on the upper left side of his belly.  Aidan will receive antibiotics during and after the procedure, and pain medication as needed. 

The new tube will extend out about 5-6" and is about as thick as a drinking straw.  He will use this tube for the next 3 months or so, before being allowed to switch to a low-profile button (like the AMD Mini-One or the Mic-Key).

Aidan will be in the hospital for at least one night - potentially more, depending on how he does - but he's a tough kid and we expect him to do fantastic!  We are excited to see what the future holds, and hopeful that this will make everyone's life a bit easier in the long run.  Wish us luck!

Tuesday, May 29, 2012

Toddle Along Tuesday - Favorite places to shop

Happy Toddle Along Tuesday!




Today's topic, courtesy of Mama G, is Favorite Places to Shop.  As a parent, you quickly learn how to find the toys, clothes, gear, and diapers that work best for your babe.  No exception here!

My first shopping rule is Thou Shalt Not Pay Full Price.  With that in mind, and the Philadelphia Premium Outlets on the horizon, I head out on the dealhunt.

Most of Aidan's clothes are from The Childrens Place and Gymboree.  They fit him well, and I am frequently able to find outlet sales to combine with coupons, netting me items around $2-$3 each.  The Children's Place gives us khakis, dress shirts, and polos - for those preppy days - and Gymboree provides the tees and shorts required for hitting the playground.  When I don't have the time or energy to hit the outlets, Target is my go-to.  They always have the best jeans, and I can find everything I need (and hundreds of things I had no idea I needed) in minutes. 

For everything else - gear, diapers, toys, and kitchen sinks - there's Amazon.com.  That place never ceases to amaze me with their selection, prices, and customer service.  It's not every day you stumble across a retailer that ships computer software, bath toys, and curtain rods all in the same box!

The best part about shopping online?  Eliminating all of that pesky shopping fatigue!

Monday, May 28, 2012

Guest Post - Rose

Rose is a beautiful girl with an even more beautiful heart.  She blogs from time to time over at Walking the Labyrinth, and she is currently adjusting to having a new baby Aidan in the house :)



It's heartwarming to see Aidan through the eyes of a child, or a pup.  To them, he is nothing other than he should be.  He's sweet and happy and fun.  He's not broken.  He's not complicated.  He's our Bug.  Nothing more, nothing less.


OH HI! MY NAME IS ROSE! ME AN’ MY MOM AN’ MY SISTER JUST MOVED IN DOWNSTAIRS! WE LIVE WITH BUG, AT LEAST THAT’S WHAT MAMA CALLS HIM, “BUG” BUT HE DOESN’T LOOK LIKE ANY BUG I’VE EVER SEEN. HE DOESN’T SMELL LIKE ANY BUG I’VE EVER SMELT EITHER AND I’VE SEEN AND SMELT LOTS OF BUGS. I MAY HAVE TASTED A BUG OR TWO, TOO, BUT DON’T TELL MY MAMA. SHE’S A REAL CONTROL FREAK ABOUT WHAT FOODS I’M ALLOWED TO EAT! SO IS BUG’S MAMA. HAHA! BUG CAN’T EAT BUGS, EITHER. THE MAMAS SAY IT’S ‘CAUSE HE IS MEH-TICK-ALLY COMPLICATED BUT I DON’T THINK HE IS MEH-TICK-ALLY COMPLICATED BECAUSE MY MAMA HAS TO PUT THIS SMELLY GOO ON MY BACK ONCE A MONTH TO KEEP THE TICKS AWAY AND I SNIFF AND I SNIFF THE BUG AND HE DOES NOT SMELL LIKE MY SMELLY TICK GOO. 

ANYHOW, MAMA TRIED TO EXPLAIN THAT WHAT IT MEANS THAT BUG IS MEHTICKALLY COMPLICATED IS THAT HE NEEDS TO EAT SPECIAL FOODS THAT ONLY COME FROM THIS TOTALLY GROSS SMELLING FORMULA. I DON’T THINK IT MEANS HE IS SICK THOUGH BECAUSE HE IS SURE NOT SICK. I MEAN, HE CRIES SOMETIMES AND HE SURE CRIES LOUD SOMETIMES BUT MOSTLY HE LAUGHS A LOT. SOMETIMES WE ALL PLAY IN THE BACKYARD AND MAMA HOLDS HIM AND GIVES HIM BALLS TO THROW FOR ME ANY MY SISTER. HE DOESN’T THROW THEM ZACTLY HE JUST DROPS THEM, SORTA, BUT IT’S STILL FUN TO CHASE THEM. 

MAMA HAS BEEN TEACHING BUG A NEW TRICK, IT’S AN OLD TRICK TO ME. BUG HAS BEEN LEARNING ABOUT WHERE HIS HEAD AND BELLY ARE AND MAMA IS TEACHING HIM WHERE HIS TONGUE IS. ALL MY FRIENDS CALL ME THE LICKER SO I TOTES ALREADY KNOW WHERE MY TONGUE IS. SO WE PLAY THIS GAME AND MAMA SAYS “WHERE’S YOUR TONGUE” AND THE BUG PUTS OUT HIS TONGUE AND THEN I PUTS OUT MY TONGUE AND THEN BUG LAUGHS AND LAUGHS AND LAUGHS. SOMETIMES IF MAMA AND BUG ARE SITTING CLOSE ENOUGH WHEN I PUT OUT MY TONGUE I TRY TO LICK THE BUG BUT I GOTTA DO IT WHEN MAMA ISN’T LOOKING BECAUSE SHE’S ALWAYS ALL “NO, ROSE, NO TONGUE” WHICH, PARDON MY FRENCH, IS TOTES NOT COOL.

BUT ANYWAYS. I LIKE THE BUG, ALTHOUGH, I STILL DON’T THINK HE IS A BUG. AND I DON’T THINK HE’S ALL THAT MEHTICKALLY COMPLICATED ‘CAUSE HIS MAMA DOESN’T PUT SMELLY STUFF ON HIS BACK LIKE MINE DOES. AND FOR REALZ, HE CAN’T BE SICK ‘CAUSE HE’S A HAPPY GUY. SMILES LOTS, LAUGHS LOTS, RUNS AROUND LOTS, HUGS LOTS, CUDDLES LOTS, AND THROWS THE BALL FOR ME. SOUNDS LIKE A PRETTY NORMAL BUG TO ME.


Friday, May 25, 2012

Fun Finds - Ice Cube Trays?

You heard me.  Ice cube trays.

It's no secret that I adore Ikea.  Our new house could be an Ikea showroom, and I find the Swedish do-it-yourselfer-paradise oddly Disney World-esque.  So it's no real shock that they'd worm their way into Fun Finds Friday before long.

This week's find?  Ice Cube Trays.

Made of synthetic rubber, this fun-shaped freezerware is PERFECT for kids during the summer.  Especially if you're trying to convince your child that plain old ice is the world's yummiest treat!

Thursday, May 24, 2012

How goes the tube?

I've had a lot of people ask how Aidan is handling the tube, so it's probably time to share how that's been going.

Does he pull his tube out often?
No, not often.  Occasionally, though.  For the most part, he leaves it alone (and so do the other children), but sometimes when the tape is getting really loose, or it's hot and sticky out, or it's 4pm on a Thursday - he pulls it out.  So yes, it happens, but it doesn't rule our lives like we thought it might.

Does he hate being tube fed?
Not at all.  We haven't yet stumbled upon a total volume or rate that he can't handle (granted, we haven't tried especially hard.).  In the morning, when we get up, I always ask him if his belly is full (nods yes) and if he's happy to have such a nice full belly (vigorously nods yes).  I'd say, all in all, he's a happy little monkey.

Does he seem more shy or self-conscious with the tube?
This one is tricky.  Yes and no.  No, in that he doesn't care what he looks like or who sees him.  There is no embarrassment, no shame, and no sadness at looking different.  He is who he is, and he's fine with it.  And really, so are the other kids.  Questions are asked, answers are given, and it's never awkward.  The grown-ups are a different story, but that's another issue for another day.

Where we do run into difficulty is in crowds.  Aidan is much, much more clingy, nervous, and anxious in large or loud crowds when his tube is in.  Gymboree can be too scary, laughing children can seem too loud, and the world can be too much.  It doesn't always happen, but it often does, and all we can do is comfort him and let him experience things at his own pace.

Too much, mama.


Any reactions to the tape?
Aidan has super sensitive skin (we've dealt with some pretty nasty eczema since birth) and we were concerned about how he'd react to the various dressing retention tapes (we use Duoderm, Tegaderm, and a variety of medical tapes).  For the most part, he does fine, although if we leave the tape on too long (5-7 days), he gets a pretty funky rash.  Definitely good incentive to change that duoderm more often!

Is something burning...?

Please, never hesitate to ask questions if you have them.  We're only too happy to share our journey.

Tuesday, May 22, 2012

Toddle Along Tuesday - Favorite firsts

It's Toddle Along Tuesday!  This week's theme - Favorite Firsts!



One of the best parts about new parenthood is being able to experience those precious firsts.  But how do you choose a favorite?  First smile?  First laugh?  First step?  First word?  Each of those were amazing, beautiful moments, but none of them were my favorite.

The photo I'm about to share is an invitation to share my favorite first.  I look terrible (he looks amazing), and I don't even care.  It's the first time he looked into my eyes, and I looked into his.  The first time I was able to see the tiny face that I already loved.  The first time he saw his mama.  I adored him.  He was just hoping for some breakfast.

Hello, precious.  I'm your mama.  You're my baby.

Monday, May 21, 2012

K-E Diet - These are NOT Super Tubies

Fads come and go, and by and large we try to teach our children to ignore them.  "Be yourself!"  "You're perfect just the way you are!"  Nothing to get riled up over - given enough time, kids will stop tattooing mustaches on their fingers and planking, just as they stopped keeping pet rocks and collecting Furbies.   These things tend to work themselves out.

Occasionally, however, we cannot stay silent.  We all seem to recognize many of the inherently dangerous fads - The Choking game, Car Surfing, Vodka Eyeballing.  These fads belong almost exclusively to idiotic teens with too little parental supervision and no instincts for self-preservation.  But what about trends that belong to assumably otherwise-intelligent adults?  Fads that are allowed (and even encouraged!) by actual doctors?



I'm referring, of course, to the K-E Diet.  I learned about this fad in a New York Times article cleverly titled Bridal Hunger GamesBrides who lack the time and/or desire to exercise and eat right pay a doctor to "supervise" a 10 day plan during which an NG tube is inserted and 800 calories worth of nutrition are pumped in per day.  The article then goes on to compare this "diet" to other diets like South Beach, Atkins, and Juice Cleanses.  The appeal?  K-E dieters are told that they can lose up to 20lbs in 10 days.

Whoa.  From the diet side of things, this is dangerous.  20 pounds!?  The human body is absolutely not made to SAFELY lose that much weight that quickly.  But this isn't even what bothers me.

As you know, I am the mother of a Tubie.  A Super Tubie, to be specific.  His tube nourishes him, helps him grow, and helps keep him alive.  It's a *struggle* every single day.  It can be exhausting and stressful and depressing - but it's 1000% necessary, so we do it.  To see someone CHOOSE this simply to look prettier without working for it sickens me.

Do you know what a day in the life of a Tubie is like?  Let me tell you...

You wake up, not having had a great night's sleep, because your pump alarm went off over and over last night for no apparent reason.  Your mom probably woke you up once or twice to unwind your tube from around your neck - and it doesn't look like she's slept lately either.  You'd like to get out of bed, but you can't, because there's an elaborate procedure that must be done first.  Unhook the pump, flush the tube, tape, re-tape, tape some more.  You're headed to school, with 3 or 4 extra outfits in your bag, because your tube has a habit of leaking your stomach contents everywhere you go.  You watch your friends eat waffles and bananas and bagels while you choke down prescription medical liquid nutrition.  When you just can't handle the taste anymore, the rest is pumped into your stomach through your tube, requiring you to sit for an extra half hour after everyone else has gotten up to play.  You'd like to eat, but you're not sure you even remember how.

Everyone stares and wonders what's wrong with you.  People might even ask your parents why they won't let you eat, since you look so healthy.  What they don't know is that your parents and your doctors and YOU work tirelessly so that you can look, feel, and behave as normally as possible.

After school, you're brought home and prepared again for your nighttime feeding.  Every time you're fed, someone has to withdraw stomach contents and test them to make sure your tube is still in your stomach.  It's not fun for you, and it doesn't appear to be fun for mom or dad, either.  You're exhausted, and you fall asleep entangled within your tube, only to be awoken by the ever-present pump alarm and/or the mama who wakes you to free you from your tubie noose.

This was a good day.  You didn't decide to pull out your tube.  You didn't vomit it up.  Curious playmates didn't pull it out for you.  All of these scenarios end with you being bound tightly in blankets, held down, and having a new tube forced into your nose, down your esophagus, and into your stomach.  You gag, you choke, you cry, and you plead for it to stop.  It doesn't stop, because this is life with a tube.

Please explain to me how this is worth shedding a few pre-wedding pounds...

Friday, May 18, 2012

Fun Finds - Super Tubie!

Bear with me, it's yet another Feeding Tube Find.

There's a really helpful organization called the Feeding Tube Awareness Foundation.  They've provided me a wealth of information about what tubes are, how they work, and how to live with them.  While poking around on their website, I found a place to buy Feeding Tube Awareness apparel.

The selection is basic - t-shirts and onesies for the Super Tubie in your life, and t-shirts, onesies, and hoodies for friends and family to don, proclaiming their Love for their Tubie.  I so, so desperately want to buy Aidan a Super Tubie shirt!!


I think it would be a great look on hospital day, no?

Thursday, May 17, 2012

For Friends & Family of Tubies Everywhere...


​The Feeding Tube Awareness Foundation has a great page for Friends & Family of tubies. 
 
Dear Friends and Family, 
We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do. 

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many tubie kids do not look sick. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy. 

Here are some things we would like you to know: 

Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few tubie daddies do not even know how to do everything. 

If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans. 

Some environments can be very challenging for our children
Birthday parties with lots of kids can be loud and boisterous. Many tubie kids are overwhelmed because of their sensory issues. This may lead to crying and vomiting. Tubie parents may want to know a lot more about the environment, the number of people, noise levels so they can vet the environment and weigh how their children will do. Moreover, tubie parents are concerned about exposing their kids to germs. A simple cold for a healthy child may land a tubie child in the hospital. Unfortunately, this is true. 

Tubie kids may also get overwhelmed at holiday gatherings where eager relatives rush over to hug or kiss them. It may take them time to adjust to a new environment (and realize nothing bad like a medical test is going happen there). Moreover, holiday gatherings have a lot of food. Some of our kids want to eat, so it can be hard to limit food to what is safe for them. We would appreciate that food be kept out of reach of our kids and that a parent's permission is received before any food or drink is served to our kids. For ex. Some tubies can't have thin liquids because it will go directly into their lungs when they swallow, but if offered water or juice they may accept it. 

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can't be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Wait staff may even take it upon themselves to bring your child food (this has happened to a number of parents who are then left to explain why their child is unable to eat).

We are tired
There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren't always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream. 

We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. Families may not realize how stressed tubie parents are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong. 

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn't have to see. Many of us shouldn't have seen our kids intubated and connected to so many wires you aren't sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons. 

We don't expect sympathy or necessarily want sympathy from you
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don't particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job. 

It may seem silly to you, but it might be cause for celebration for us if our kids eat even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

A lot of tube fed children eat and drink some, but not enough to grow and develop 
Just because you see my child have a bite or two of something, doesn't mean they can eat or drink enough to sustain themselves and grow. And, a tubie child may turn his head away from the cookie you think he is going to eat. "All kids like cookies!" may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn't that we haven't stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kiddos can't eat. Those don't often go away overnight.  

Some of our kids are on SSI, Medicaid or Medicaid Waivers. Many children on feeding tubes are legally disabled and entitled to certain services. Please don't think we are milking the system or are lazy. 
Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more to feed a preschooler. On top of that there are copays for doctors, ER visits/hospital stays and other medical supplies. Some medical supplies aren't covered by insurance at all. Moreover, many tubie families have to have at least one parent home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight. 




Please do not:

Feed any child something without the parents' permission. This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from thir diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering. 

Compare a child with a medically complicated history to a perfectly normal child who has never had food hurt them. 
We appreciate that your children or others in the family are wonderful eaters. We just want people to look at what our children can do and what they have overcome. If all you know is food hurts, it is a huge accomplishment to tolerate small amounts of food and have it not hurt. 

Ask me when my child is coming off the tube! 
The real answer is that a lot of tubie parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex. This also applies to other medical equipment or developmental delays our children may have. 

Remind me of the "what ifs" 
Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.


And most importantly, to keep our kids nourished, it is all worth it. 
Thank you. 



Tuesday, May 15, 2012

Toddle Along Tuesday - Things I never thought I'd do

Happy Toddle Along Tuesday!



Today's topic, courtesy of Mama Geeky, is Things you never thought you'd do.

Parenting is a funny thing.  It's so much fun to plan how it will go.  In the weeks and months prior to the arrival of your little bundle of - ahhem - joy, you find yourself imagining your future with your doting husband and charming offspring.  We were no exception - and I'm happy to share some of the highlights of my delusions with you today.


1. My child will never go to bed without pajamas.  How hard is it to dress them properly?
  Turns out, when push comes to shove, a feverish baby with a dropping pulse ox trumps cute pajamas.



2. My child will never wear sandals.  I hate them.
What am I never wearing, mama?  I couldn't hear you...  I was too busy showing off these here sandals...




3. I will never take humiliating pictures, simply because they are hilarious, and then post them on the internet.  I will certainly never repost them on a blog.
'Nuff said.



In seriousness though, being a parent has taught me so much about parenting.  There are things to stand firm on (We do not hit!), there are things to chill out about (You will sit in your chair when eating! Or on the floor...  Or, you know, walk around.  Whatever...), and the fun of it all lies in learning which are which.  As a mom, I choose my hill to die on at least a dozen times a day.  At the end of each of those days, my husband and I are still married, our son is smiling, and I breathe a sigh of relief because I know that I've held true to my biggest "I will never."

I will never give up, no matter what life throws at us.  I will never stop believing that everything will be okay.  Everything else, after all, is just gravy. :)

Monday, May 14, 2012

Update: 4/24 Visit to CPED

Today, we had our second visit to CPED (Center for Pediatric Eosinophilic Disorders) downtown at CHOP.  We always leave the house early, and it's a good thing, because on this particular trip, it took us nearly two hours to get there.  Aidan was a happy passenger, and he got a little nap along the way, so it wasn't too bad.

When we arrived, we headed right up to the third floor, where Allergy and Nutrition hang out.  We were fifteen minutes early, but it didn't matter - Allergy was running 90 minutes behind.  After waiting for the better part of two hours, we were finally brought back to a room.

First, we did the ever-enjoyable (enter sarcasm here) weigh (20lbs - 2.2%!!!) and measure (28 inches - 0.2%).  Aidan wasn't exactly pleasant - I wish I knew why he loathes being weighed and measured so much - but once the scale was put away, he started to chat with me, play with toys, and explore the room.

Next, the Nutritionist came in.  We like Michele - and she rightly thinks Aidan is the most adorable kid ever.  We talked a lot about how things were going with the tube and where we go next.  She agrees with us that we are in the tube business for the long haul and that the G-Tube is the best solution for us.  We are struggling with the NG Tube, and given the road that's ahead of us, we don't feel it's necessary to do this for an extended period of time before starting the (different, but still present) struggle with the G-Tube.  So she will be sending her recommendations to the GI, and I'll be following up.

After we finished speaking with Michele, the Allergist came in.  We rehashed a lot of things we've already spoken about (No, he cannot have Neocate Nutra - he's allergic.  No, he cannot have flavored Neocate, he's allergic.  Yes, we've done SPT.  Yes, we're willing to do Patch.) and discussed our future plans.  She also agrees that the G-Tube is the way to go.

We will be going back to CPED to see Allergy and Nutrition for Patch Testing toward the end of the summer, in preparation for his next food challenge, which won't be until closer to his 2nd Birthday.  We are in no rush with food, and our focus right now is on getting him healthy, seeing him gain weight, and getting our lives on track with the tube.

Not a terribly exciting update, I'm sorry to say.  But he is doing well and we are moving forward :)

Friday, May 11, 2012

Fun Finds - "When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes"

I stumbled upon a great website the other day - http://www.mitoaction.org/

Mito Action is meant to educate, support, and advocate for families dealing with Mitochondrial Disease (Mito). Mito is a genetic disorder where mitochondria of the cells fail to produce enough energy for cell and organ function. Mito can cause poor growth, weakness, neurological problems, delays, and diseases of nearly every organ in the body. The prognosis is really unclear - some people live fairly normal lives, while others are severely compromised.

There is so much more to learn than I could ever tell you - head on over to Mito Action to read more and to get involved.

What brought me to the page was a book that the organization puts out. It's called When Jeremy Jones' Stomach Stopped Working: A Story for Children with G-Tubes.


Jeremy's a fun, active kid.  He sings during class and catches tadpoles in the creek.  He also has gastric dysmotility, which means his stomach feels very full after only a few bites.  He gradually loses weight, and has less and less energy to do the things he loves doing.  Jeremy needs a G-Tube, and we learn more about them right alongside him.  Jeremy loves his new tube, and it helps him grow strong and tall.

Mito Action was kind enough to send a book to Aidan.  I am looking forward to reading it to him and using it to explain to and educate others about G-Tubes.


Thursday, May 10, 2012

Aidan's Tubie Friend!

Meet Toby.  He's Aidan's new Tubie Friend.  We adore him.


Toby was a gift from a group called Tubie Friends.  I've written about them before, and their basic mission is to provide "just like me" friends to children with tubes.

Aidan's Tubie Friend, Toby, has an NG tube (like Aidan) and a G-Tube (like Aidan will be getting in the future).


Toby arrived with a card from the Tubie Surgeon, some feeding accessories, and a letter from the organization about what they do.














 
We are SO thankful to have received Toby.




Wednesday, May 9, 2012

Way Back Wednesday - Newborn


Last night, he gazed up at me with those same eyes while snuggling at midnight.  I love you, mommy.  I trust you, mommy.  I need you, mommy.  I totally melt, every single time.

Tuesday, May 8, 2012

Toddle Along Tuesday - Cheap ways to entertain kids

I'm excited to link up again with Growing up Geeky for Toddle Along Tuesday!  This week's theme?  Entertaining your child on a budget.




As the reigning queen of fiscal responsibility (don't you laugh at me!), I'm happy to share some of my favorite tips for entertaining your toddler on the cheap.  For me, it really boils down to redefining entertainment.  My darling boy is 16 months old, so he generally looks to me to understand what's "fun." 

1. Let toys find them.  While I do housework, Aidan discovers ships, lightsabers, monsters, and magic wands.  I like to think he enjoys pretending to ship himself to China:



2. Let them help with the chores.  Triple bonus.  Chores need to get done, chores don't cost money, and it's totally a learning experience.  Aidan loves to help put away his own clothes.  As a mom, you will quickly learn the concept of "good enough."



3. Let them sort the junk mail.  Toddlers + Paper = Glee.  It defies explanation, but it works.


4. If your child is detail-oriented, make a "big mess" and let him clean it up.  It will take forever, and again, costs you nothing.


5. Bubbles!  Low in cost, high in awesomeness!  We spend a bit extra on Gymboree bubbles because they're great, but dollar stores have bubbles too!


6. Tissues? Wipes?  Unused, please.  If Paper + Toddler = Glee, then Paper + Container + Toddler = Nirvana.



And when all else fails, hit up your local consignment sales.  One trip to the sale got me this massive haul for under $20.

Monday, May 7, 2012

Feeding Tube: A Week in the Life

Saturday
After several hours of learning down at CHOP, I was the one to perform Aidan's very first tube placement.  The pride I felt in my success was indescribable.  Right up until Aidan ripped it out, roughly three minutes later.  We left it out, deciding to let him nap and to place it again when the Home Care Nurse arrived later that afternoon.

When the nurse came, I was again the one to place the tube.  This didn't go as smoothly as it did down at CHOP.  Aidan coughed and gagged and screamed and tried to vomit the tube up.  But we did successfully get it placed, and we confined Aidan to his "no-no's" for the rest of the evening.

Sunday
Things went shockingly well.  Aidan woke up with the tube still intact (whoa!) and I ventured out to morning playgroup with him.  The other kids at playgroup were fine - not even vaguely curious - and I felt (for the first time) that we might be able to do this after all.  I successfully fed him by pump in the restaurant, and again later on in the mall.  I thought all was well.  I was totally smug.  Ha.

That night was the first (of many) that I would wake up to a pump alarm and rush in to find that the flow was restricted due to my darling boy's habit of wrapping the tubing around his neck.  Please explain to me how one calmly goes back to bed after that?

Monday
Back to CHOP for a GI checkup.  Upon arrival, I noticed that the feeding port had opened itself up in the car, leaking large amounts of stomach contents all over his carseat.  Aidan was, of course, screaming bloody murder because he was starving - and I was in tears.  I had no spare clothes with me at all (Aidan hasn't needed an outfit change since he was a NEWBORN!) and we wound up going into our appointment smelling like stomach (Not a good thing.  Really, really not.)   Aidan left CHOP in nothing but a diaper (classy) and we drove to Exton mall to meet up with a friend.  I took him right to a children's clothing store, where I frantically scoured the racks for something inexpensive in his size.  Having no shame whatsoever, I dressed my smelly, pukey kid in his new clothes in the middle of the crowded mall.

We walked around the mall for a bit, with this friend and her beautiful daughter, and decided to stop in a children's shoe store.  I took Aidan out of his stroller to try on shoes and noticed that he had AGAIN opened his port and emptied his stomach all over himself.  Sigh.  Back to the clothing store, another new outfit, another mid-mall change.

Onward to the mall's playground, where Aidan ran and laughed and played.  I got a little too confident there - even though I had taped the feeding port closed, it popped open and emptied more stomach contents onto the ground.  At least his outfit was dry?

At that point, we conceded defeat and went home.  That evening began the alarm problems.  The pump alarm went off at least 4 times.  Who needs sleep?

Tuesday
First day of daycare with the tube!  Which, of course, leaked all the way into school.  Sigh.  The kids were great with it though - nobody touched it at all!  More pump alarms, all night long.  Sleep is becoming a distant memory.

Wednesday
Today, the feeding port started leaking at daycare.  No one could figure out how to plug it up, so Tom had to go get him.  Three more pump alarms that night, one of which was due to a strangling baby.

Thursday
Two pump alarms - maybe we're getting better at this?  Sadly, we're not.  Aidan pulled his feeding tube for the first time since the first day.

Friday
Aidan went to school without his tube.  No leaking.  Glorious.  After work and school, Tom wrapped him up and held him down while I placed it again.  We were rewarded with alarms all evening long.  Will this never end?

Saturday
Never one to go out quietly, Aidan finished out the week with a dramatic tube-pulling just before the Home Care Nurse came by.  This time, it was Tom's turn to place the tube (he did great!).   Gymboree was difficult - parents seemed to be encouraging their children to avoid Aidan, which is absolutely heartbreaking.  He's no more fragile than any other child.  Please don't ostracize him.


To Recap:
Aidan's doing great.  He's gained weight, he's happier, louder, more active, and a better sleeper.

We, on the other hand, are exhausted, stressed, and discouraged.  I have to believe this will get better, but it was a rough, rough week. 

Friday, May 4, 2012

Fun Finds - Feeding Friends Stickers

Fellow Tubies, you have GOT to check these out!  They're adorable dressing retention tapes - far cuter than your run-of-the-mill Tegaderm!  I love choosing which animal to give Aidan (Turtle, Monkey, Penguin, and Whale) and other children always notice them right away (and not without a bit of jealousy!).  We use ours for Aidan's NG Tube, but they would work well for PICC lines, Central lines, Cannulas, and other medical dressings.  I've known a few kids who want one just to look stylish.


You can find them at Kids Hope Chest!

Thursday, May 3, 2012

Feeding Tube: Tube Day


Tube day kicked off on a Friday April 13th.  We weren't scheduled until Saturday, but Friday brought the arrival of a month's worth of supplies.  It was so overwhelming to see all of the things it will now take to keep my baby fed.


- 30 enteral feeding bags (one per day, to be washed between feedings)

- 4 pieces of Duoderm
- 4 pieces of Tegaderm
- 4 pouches of water-soluble lubricant
- 2 60ml Syringes
- 1 5ml syringe
- 2 rolls medical tape
- 1 roll pH paper
- 1 box no-sting barrier
- 1 Infinity pump
- 1 Pump backpack
- 2 NG Tubes

It was a long evening.  We stressed and wondered how it would go.  Would we be able to do it?  Would we be overwhelmed?  There was only one way to go - forward.  Morning came, as mornings tend to do.

Megan arrived, and Katie arrived, and suddenly it was time to go.  We piled into the car and headed down to CHOP.  There was some "where is this building anyway?!" stress, followed by some "where is this room anyway!?" stress, but we made it.  Katie and Aidan left safely in the family center to play, Tom and I headed into the training room with Megan (to whom I owe every single one of the following photos) and the instructor.  There, we met our baby.  I'll call her Tubella.


Tubella had a family with her - older brother Tubissimo, twin brother Tubello, and infant brother Tubito.  The Brothers T were merely bystanders - we had all of our fun with Tubella.

After much discussion, many questions, and a fair number of "That's What She Said" jokes, we found ourselves ready to intubate Tubella.  She was very good about it - such a doll, really.


Step 1: Apply Duoderm to the face in nose-to-ear direction:

This step includes trimming the duoderm to a workable size, applying no-sting barrier, and being as soothing as possible while lying through your teeth about how this is almost over.
 





Step 2: Check The Tube

 




 Flush the tube with a syringe-full of water to check for leaks.  Wiggle the stylet to ensure that it will be removed when needed after intubation.



Step 3: Measure and Mark the Tube

Measure from the tip of the nose to the earlobe, and from the earlobe down to the belly button.  The "right" spot to mark is halfway between the belly button and the bottom of the ribcage.  Measure twice, mark once (with a sharpie, all the way around the tube).  You'll need an easy visual later on.





Step 4: Intubate
 

 
Lubricate the end of the tube and insert into the nostril.  Feed the tubing down the esophagus until you reach the line you marked.  It may help to offer Mr. Baby his wubbanub (Tubella was sadly uninterested) - older kids may prefer to drink water from a straw while being intubated.




Step 5: Secure the Tube, Make it Comfortable
Use Tegaderm (we use another piece of duoderm instead) to secure the tube to the face.  Pull out the stylet, and check to confirm placement (withdraw a small amount of stomach contents.  Check coloring and pH to be sure it's in the stomach!).  If placement is good, tape that tube down and continue assuring your screaming patient that you love him dearly and you're ever-so-sorry.

That's really about all there is to it.  Shockingly quickly, it was time to bring Aidan in for his tube placement.  We decided that I'd be the one to perform it, so after a quick break, we got down to business.

First, we wrapped him tightly in blankets.  He was not a happy boy.

 The process itself is very quick - it was no time at all before I found myself actually doing it.

And then it was over.  Done.  Aidan looked suitably sad, and actually tore the tube out only moments after this picture was taken.
Once we got home, things calmed down quite a bit.  Aidan snuggled up with Tom for a bit:

 From there, it was only a few short hours before our silly monkey returned to us.



That's our story.  We're proud of ourselves, proud of him, and ready for whatever comes next.