Tubie Tidbits

For those of you who are interested in a little more information about feeding tubes, I thought I would share a few things that I've found to be very helpful.

Once Silas' feeding tube surgery was scheduled, we stumbled across Tubie Friends.  They sew feeding tube buttons into Build-A-Bear stuffed animals and make them available for kids with feeding tubes.

We contacted them before Silas' surgery, and they rushed our order so he could get it as soon as possible.  It arrived the day of his surgery.

It was nice for him to have a stuffed animal with a "button" like his that he could play with and get used to.  (He liked learning how the different tubes and extensions hook and unhook.)  We named ours Fudge.  We took Fudge to school, and the school counselor used him to tell the other kids in Silas' class about his feeding tube.

You'll notice that Fudge has a piece of cloth around his button.  We eventually bought Silas something like this from Button Buddies.  Feeding tubes can "leak" throughout the day.  Some people prefer to leave it open to the air.  We tried this, but the leakage was irritating Silas' skin. It was also making his granulation tissue worse.  (Granulation tissue is a red, fleshy tissue that often develops around feeding tube incisions.)  At first, we tried using gauze, but the strings would often stick to him and become very difficult (and painful) to get off.  The Button Buddies have been wonderful!

Another great resource that I found was the Feeding Tube Awareness Foundation.  (That's their logo at the beginning of the post.)  Here are a few of their pages that you might find helpful:

About Feeding Tubes 

Different Types of Feeding Tubes - Silas had a NG tube over the summer and then transitioned to a G-tube button.

For Friends and Family

Products - I just love their logo.  I'm planning to buy something from their store soon.

Note:  You can click on any of the highlighted words above to follow the links.

Janel

Camping at Stone Mountain

Our Give Kids the World Passport expires this month, so we're trying to squeeze in a few more trips before it's gone.  We wanted to stay the night, so we could visit one attraction on Saturday and another on Sunday.  We didn't have much money to spend on lodging, so we decided to CAMP!  Yes, this was REAL camping - in a tent.

After our 3-4 hour trip to Stone Mountain Park (just east of Atlanta, GA), we checked in and set up camp for the night.

From there, we headed over to the Crossroads Area where the paid attractions are located.  They had provided us with free parking going into the park, and we each received wristbands that got us into almost all of the paid attractions.

The kids had a blast at the Camp Highland Outpost - a low ropes course with a zip line.

We had a great time riding the Summit Skyride to the top of Stone Mountain.

It was gorgeous up there.  Wish we'd had more time to just sit and take in the view.

Their Pumpkin Festival was underway, so the kids had fun "dressing" pumpkins and making fall crafts.

Other things we enjoyed:  Geyser Towers, The Great Barn, and the Scenic Railroad.

Our day of fun ended with the Lasershow Spectacular - a laser light show with a few fireworks.

So, how did we make it camping with two kids with multiple food allergies & intolerances - one of whom is on a feeding tube - and all with no electricity or frig?

We packed lots of millet bread, rice cakes, rice cereal, etc.  Then, we figured out how we could charge Silas' feeding pump overnight.  We have a battery charger (for a car).  It has a cigarette-type outlet on it.  We plugged in an adapter that converts from the cigarette outlet to a regular outlet.  Then, we could plug the charger for the feeding pump into that.  It worked even better then we'd hoped!

car charger to left, followed by adapter, then charger, then pump...

The next morning, the kids played by the lake and fed the ducks while Criss an I tried to pack everything back up.

We had a great spot.  See Stone Mountain in the background?

I learned a lot of neat information about the monadnock (yes, it's not technically a mountain) while visiting the park.  It's a five mile walk around the base, and there's one trail you can take to the top that's about 1 mile long.  It's nearly 600 acres in size.  The carving itself covers 3 acres (larger than 2 football fields) - with Robert E. Lee being 9 stories high.  Wow!  Even when you're standing there looking at it, it's hard to fathom how massive it is.

Beyond this, there is much more underground.  One of the tour guides mentioned that what we see is just 10% of what's there.  90% of it is underground!

It made me think of the greatness of God.  How the little we can see can be so difficult for us to comprehend at times, and there's SO much more that we can't even "see" yet.  So much more to know.

"For now we see in a mirror dimly, but then face to face.  Now I know in part; then I shall know fully, even as I have been fully known."  I Corinthians 13:12

To Our Great God...

Janel

G-Tube Surgery

What a busy two weeks it has been!  Silas had his G-Tube surgery on Monday, August 13, and it's been crazy ever since.

When the GI doctor originally wanted to do the surgery in September, I had commented that I hated for Silas to miss a lot of school once the new school year had started.  The GI doctor said, "He'll only be in the hospital one night" - leading me to believe that recovery wouldn't take all that long.  That was far from true.

Even before Silas left recovery, they had trouble managing his pain.  The morphine they gave him didn't do the job, and they had to give him additional meds.  Once he was out of recovery, the doctor only wanted him to have Tylenol, which did very little for the great amount of pain he was in.

During his time in the hospital, they gave him a few, small bolus feeds.  He wasn't even back on continuous feeds (or walking more than a couple feet) before we were kicked out of the hospital.  Silas reacts to so many things that I'm sure it was for the best.  However, when he was discharged, I couldn't believe they were sending him home already.  He was in no condition to leave.  Just riding in the wheelchair was almost unbearable.

The good thing about leaving was that I was in control of everything that went into him again - and we could get rid of the IV.  The sooner we stopped putting new things into him, the sooner his reactions would end.  Thankfully he hasn't gotten to the point of those crazy screaming spells he gets when he's reacting to things.  But his colon's messed up again, he ran a fever for a week and a half, his skin is all dry & itchy, he's having random pains, and he just hasn't felt well - not to mention the "standard" pain from the surgery.

How do you convince a six year to walk when he's in terrible pain?  (The doctor wanted him walking as soon as possible to work out the stiffness and pain.)  $$$  That's right...bribery.  He probably has more money than I do right now.  We started offering him quarters (and sometimes nickels, dimes, or dollars) for walking.  We were trying to get him to walk from his room to the living room (or vice versa), so we would leave them along the path.  Once he made it to a coin, it was his to keep.  And at one point, his grandmother was matching whatever we gave him.  What a deal!

He did make it to school some last week, and today's his first (hopefully) full day.  My next post will have some of our "First Week of School Pictures."

Janel

"Weeping may tarry for the night, but joy comes with the morning."  Psalm 30:5b

Tube Time

The last time I wrote about Silas, the doctor had just scheduled him for an NG tube.  We had talked with him a lot about what was going to happen – and thank goodness, he didn’t remember his first NG tube experience (when he was 2).   To give him something fun to think about, I promised him a trip to the hospital’s gift shop after it was over.

We were admitted to the hospital, and all-to-soon the nurse came to take him for the tube placement.  It’s done in a center room on the same hallway as his room.  The room’s not very big, and they asked that only one of us go with him.  I (very quickly) voted that Criss go.

Although Silas returned to the room with a look of pure shock still on his face (trying to take in all that had just happened), they praised him for doing such a good job.  After he had a moment to gather his thoughts, he said, “I want to go to the gift shop,” and off we went.  His eyes landed on a large, plush, Spider Man ball, and his mind was made up.

Here is Silas leaving the hospital with his new supplies the next day.

Three weeks after the tube was placed, we had another appointment with the GI doctor.  In just three weeks, Silas had gained 5 pounds and grown 1/3 of an inch!  The doctor was very pleased, and I was happy with how much healthier he looked with a little more meat on him (not that he was horribly underweight, but he had not gained any weight in nearly a year).

Our local Children’s Hospital has been in the middle of computer system changes as well as constructing a new building.  The GI doctor wanted us to see him again in two months (Sept.) and talk about G-tube surgery at that time – after the hospital had finished moving into the new building.

Our initial feelings were relief at having a little more time to process all of this.  But, as the days dragged on, Silas would comment on how uncomfortable the NG tube was and how he was growing tired of having something taped to his face all the time.  He also preferred not to have to start school with the NG tube – since it’s so much more conspicuous than the G-tube.  So, I eventually called to see if there was any way we could get it done sooner.  Why postpone the inevitable?

At first there were no openings until September, but just this week they called because there was a cancellation.  We go in a little over a week.  It’s the week before school starts, so that is good.  Besides not having to start school with the NG tube, he won’t have to miss school to have it done.

In the midst of all of this (a few weeks ago), Silas was complaining of arm pain.  We’re still not exactly sure when he hurt it.  We went to a local doc-in-the-box who said Silas had a buckle fracture and wanted to put his arm in a splint.  When I found out it could not be taken off and was not waterproof, I decided that was just a little more than I could handle at the time, and we left with it in a sling.  We then saw an orthopedist who said it wasn’t too bad, and he let me choose between a waterproof cast or a (removable) brace.  Of course, by this time, Silas was all excited about getting a yellow cast (his favorite color) that all of his friends could sign.  I talked him into the brace, and the doctor found a gray one that people could still sign.  (Yeah!  Problem solved.)  The brace also helped us avoid another appointment to have a cast removed.

During the day, Silas wears the backpack that holds his feeding pump and other supplies.  At night, he has a pole that everything hooks to.  It’s very cute to watch him roll his pole down the hallway after he wakes up each morning.  I smile every time I hear those little wheels rumble.

Janel

Silas - Late Spring & Summer 2012

After our many failed attempts to find a medication or other treatment that would relieve Silas’ symptoms, we went back to see our GI here in Alabama.  We had not seen him since last August – prior to our trip to SC.

I brought up how concerned I was about Silas being malnourished for so long (as determined by his pre-albumin levels).  He said we could put in an NG tube (that goes through the nose and into the stomach) to see if Silas still tolerated Elecare.  Elecare is the one thing that Silas always did really well on (if he wasn’t eating anything else with it).  The problem was that he refused to drink it any more.  It smells bad and tastes even worse.  When he quit drinking it four years ago, he ended up in the hospital for 2 ½ weeks.

I wasn’t surprised that the GI doctor mentioned some type of feeding tube.  He’d never mentioned it before (other than having it in the hospital), but it’s something I always knew was a strong possibility.  What really caught me off guard is that he wanted to put in an NG tube first.  Silas had an NG tube during that 2 ½ week hospital stay.  It was the single most horrific experience of our lives.  They take this long tube and shove it down your nose – all while you are awake!  I’ve mentioned before that it took FOUR adults to hold him down and a FIFTH to put in the tube – and it had to be reinserted multiple times.  I had promised myself that we would never do that again.

The second thing that that surprised me was that he said we would put Silas on continuous feeds.  This entails Silas either being hooked to a pole or wearing a backpack (that holds the feeding pump) almost 24/7.  I definitely wasn’t expecting this.  However, with the amount of inflammation and problems in his digestive system, this would provide the best chance of him absorbing the most nutrients.

I also asked the GI about other medicine options.  I knew there were supposed to be options that were stronger than the anti-inflammatories he’d been taking but less problematic than systemic steroids.  He said we could try Entocort.  It’s a steroid, but it stays in the digestive system.  The GI said it’s only recently been out long enough for a generic to come out and people to actually be able to afford it.

So, the plan was to first see if Silas would drink vanilla flavored Elecare (slightly flavored nastiness).  Second, try the Entocort.  Third, consider NG tube.

Well, he refused to drink the Vanilla Elecare, so we had a talk.  (He’s really good about things sometimes if you try to explain it to him.)  I told him he had a choice (not meanly but matter-of-factly).  He could learn to drink the Elecare, or we could put in a tube that put it into his tummy for him.  We’ve met someone with a G-tube and backpack before, so he knew what I was talking about.  We looked at pictures of tubes on the Internet.  I told him to think about it.  Later that day, he said, “Mommy, I think I would rather have a tube.”  Sigh.  Who could blame him?  I don’t think I could drink large amounts of it every day either.

We moved on to the Entocort.  Second day he took it, he spiked a fever.  This is what he does when he’s reacting to something.  Found out it contains sucrose – which he’s never done well with.  Since this was our last hope before a tube, I wasn’t giving up easily.  We tried again, this time we started with one (he was supposed to take 3 each morning), then worked our way to two, and finally back to three.  First day on three, he ran a fever again.  We went back to two.  We did make it on two for three weeks (which is the amount of time they say it can take to kick in).  However, it caused all kinds of issues, and we had to quit at that point.

After talking to the nurse, we were scheduled to drop by the GI office and then be admitted to the hospital to get the NG tube.

Janel