Eat Happy!

Eat Happy!

Disclaimer

**The information provided in this BLOG is in no way intended to diagnose, treat, or cure any illness. This information should never replace the advice of a doctor. Please use this information as you see fit. This information will pertain differently to each child, each adult, and each family.**

**Resources are listed to support information associated with this BLOG. These resources support copyrights and are permissible. Information presented outside of this BLOG needs to incorporate resource sites to maintain legal status.**

**This BLOG and its information may be shared at no request; photographs will need permission from the blogger.**

Sunday, October 12, 2014

Bye Bye G-Tube

I’ve purposely waited to write this post so I could include lots of updates. Last Friday, October 3rd, Ian had his four-month appointment with his Motility-GI doctor and Diagnostician at The Children’s Hospital of Philadelphia. We were hoping that Ian’s GI doctor would tell us Ian’s G-tube could come out in the spring. Doctors typically like leaving them in through the winter-Flu season. They often are not removed in the fall.

As we were driving to the appointment the night before, I had a thought that maybe he would say it could come out now. “Now” meaning.... call the surgeon and arrange a removal and closure date. We had previously heard that G-tubes placed for longer than three years automatically require a surgical closure. I had doubts that the GI doctor would be so ambitious about taking it out before the spring.

Snuggles with mommy before the doctor

Leaving the hotel for the doctor's appointment

Then, the morning of the appointment, right before the GI doctor came in, I had a thought spring to mind...... What if he wants to take it out now.... right now? I asked Tom, and we agreed since a surgical closure was needed, we would say no.

We were excited at the possibility of hearing we could schedule surgery for the removal. Instead, we heard more beautiful ones. He precisely went through all the steps...

The GI doctor had a specific checklist of requirements for removing the tube:
1) Good growth with oral nutrition
2) Wean off GI medications
3) Ability to orally hydrate during times of stress and illness
4) No venting
5) Rare retching

THE SURPRISE

Ian had met all of the requirements. The next words out of his mouth were “So, I think we’re okay to take it out.” Tom and I stood there, staring at one another, speechless. Our words? ....... “So, how does that work?” I couldn’t think of anything better to say; I was stunned!! The doctor calmly explained that we simply deflate the G-tube and remove it, and then place some gauze over the stoma. He explained that it would take three-four days for most of the closure to take place.

Tom and I, again, looked at one another stunned. We asked a few questions like “Doesn’t it need to be surgically closed” and “Can we really do it right here, right now?” He explained that tube sites are best healed when they have a chance to do it on their own, from the inside-out. If there is still leakage after 2-3 weeks, a surgical closure is often needed.

After taking a minute to discuss what was about to happen, the GI doctor slipped out to get some gloves so he could evaluate the stoma after it was removed. Tom and I, still in disbelief realized what was about to happen. Ian looked around clueless. I took one last picture of the G-Tube for memories. We decided Tom would deflate the G-Tube and I would take it out. We spoke to Ian about what was about to happen and he seemed very excited. I was nervous since he had seemed very upset in the past about the possibility of removing the tube.

Ready to take out the tube

It wasn’t long before the GI doctor returned. He was looking around for a syringe to deflate the balloon. Obviously..... we had one in our bag! (We have everything in our bag) Tom went ahead and deflated the tube. It was still sinking in that Ian’s tube was about to be gone, for good. Then, with a deep breath, I took it out!

Deflating the balloon

Pulling out the tube

The GI doctor overlooked the site and decided there was some chronic granulation tissue. Granulation tissue is an overproduction of tissue from irritation. In tubies, it is usually from the G-tube rubbing against the sides of the stoma. Ian’s spot had been there for years, unchanged. Granulation tissue often gets very red and sore, and bleeds a lot. Ian’s never caused that kind of trouble, and it never kept growing.

Ian's stoma right after removing the G-tube

There are multiple ways of treating granulation tissue. Ian’s GI doctor recommends silver nitrate. We have used silver nitrate before. Silver nitrate comes on the end of a long stick, almost like a long matchstick. It cauterizes the granulation tissue to dry it up so it falls off. It can be highly successful, but can also be painful. Silver nitrate sticks are mostly used in-office, but can be used at home. The GI doctor did a treatment for us while we were there. He taped some gauze over the stoma and we were all done. He told us to leave it open to air as much as possible, and to keep it dry.

Silver Nitrate treatment sticks

Ian's stoma immediately after a Silver Nitrate treatment

Still in disbelief, we packed up our things. As we did, Tom said in wonderment, “It took three and a half hours to put it in, and three and a half seconds to take it out.” We shared lots of smiles, and walked back to the waiting room for our appointment with the Diagnostician. He was happily surprised when he found out they removed his tube and was very pleased Ian is doing so well.

All gone Tubie

Happy, but a little sad

Waiting for the Diagnostician

We took a couple pictures of Ian’s last button after we took it out. Call me silly, but I wanted to save some memories of the last tube.




We had a good time calling our parents and friends to share the good news. We were still in total wonderment! It didn’t seem real. I even took a photo of the front of my phone to capture the moment. Ian is even doing Beads of Courage on my phone photo.


We had a ride home filled with smiles. Ian was so happy! I was a little nervous about riding home three hours in the car right afterward, but the GI doctor assured us Ian would be fine. We checked it a few times and placed fresh gauze because of the drainage.

HAPPY CHANGES

We wasted no time getting Ian’s medicine rack out of his room. It was a three-tiered standing metal rack housing all of his supplies. We no longer needed all the fancy organization. Historically, we would lay Ian down on the top of his dresser (in the recessed area where a baby changing table would rest) to clean his G-Tube. Without a tube, we could use that area for his medical supplies. We rearranged Ian’s furniture with the medicine rack gone. He will be getting his new twin-size ComfyLift bed in a few weeks and will need more room. Ian was very excited to arrange his “big boy room.”



Later that night, the granulation tissue was looking very red and inflamed. Silver-nitrate-treated granulation tissue is usually ashy white-gray from the cauterization. Ian’s seemed to have rubbed off on the gauze. We had some silver nitrate sticks at home and decided to do another treatment at bedtime. We placed some more gauze over the stoma. Tom and I decided to sleep on the floor in his room the first night since it had been draining and bleeding so much. We left the sheet off his ComfyLift bed so we could easily clean any drainage or bleeding.

We let him sleep without a shirt and propped him up well with blankets. We decided giving it air-time overnight would help the healing. It did bleed some overnight. In the morning, it was very dry. We found the best way to clean it was to let him sit in the tub briefly. It isn’t a good thing to spend too much time submerged in water since the stoma isn’t closed yet. Bath water can make its way through the stoma.

CELEBRATION DAY

Since this was Ian’s first day “tube-free,” we took him out to celebrate! When we changed his tube for the first time, we took that first tube we removed to Build-A-Bear. After lots of disinfecting and cleaning, we placed his first G-Tube in a Bear he named Noodles Nissen (Ian’s reflux surgery is called a Nissen, but Nissen is also a brand of noodles. We thought Noodles Nissen was a great name). Noodles had been Ian’s special tubie-friend the last few years.... with a G-Tube just like his!

Ready to put the fluff in Noodles (9.2011)

Noodles Nissen

Cleaning Noodles' button (9.2014)

We wanted to create the same memory with his final tube. We made another trip to Build-A-Bear for a “final-tubie” friend. Ian chose a brown doggie.


He really enjoyed making his doggie. He chose “cool,” “caring,” and “happy” for his doggie’s personality.

Adding personality to his Doggie

Then it was time to put the stuffing inside. He got to push the pedal while the fluff came out of the machine and created his new friend.

Time to stuff the fluff!

Perfectly soft and snuggly

My two tubie-friends

We asked a manager if they could sew in the G-tube for us. When we made Noodles, they were able to stitch it into the fabric. We were fortunate enough to have someone to do that for us again. Ian was very excited about his new friend. He named him Buttons, after his G-tube “button.” He gave them both lots of tight squeezy hugs. When Buttons was finished, we all went out and had a nice lunch at one of Ian’s favorite restaurants.

Carrying home Buttons

Buttons

Ready for lunch!

Ian was so proud of his new tube-friend. With Noodles and Buttons as friends, Ian will always have a reminder of his special tubie-journey. We even found a couple preemie clothes we had saved. They were a little small for Noodles and Buttons, but they still looked adorable.

Noodles and Buttons

Wearing Ian's preemie clothes

THE HEALING PROCESS

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
**Disclaimer:

This next section will include photographs of Ian’s healing G-tube stoma. Some of them are a little icky if you aren’t used to seeing these types of photos. I hope Ian’s healing photographs will help others prepare for what they may see as well. I must add again that every child and adult is different. Individuals will follow their own course of healing.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Once the G-tube is removed, the body will usually close the stoma all on it’s own. The body should close completely in 2-3 weeks. About 25% of the time, they need surgical closures. We began keeping an album of Ian’s healing process. The first couple days were very red, sore, and had some bleeding. As the stoma continued to heal, we still saw raised, red areas. Since the silver nitrate didn’t help much, we wondered if maybe it wasn’t granulation tissue. Sometimes stomach mucosa can be pushed through the stoma, to the outside of the body. This is called prolapse. Prolapse means to fall out of place. In medical scenarios, this could mean organs or tissue. Prolapse almost always needs a surgical repair. We began to wonder if the raised, red area was really stomach mucosa outside of his body. The other possibility is granulation tissue that is chronic and scarred over from being there for 2-3 years.

DAY ONE

DAY TWO

DAY THREE: with drainage

On the four day, we started using an Alum powder paste to dry out the tissue. We had heard that Alum powder is an excellent way to dry up and remove granulation tissue. It is not nearly as irritating as silver nitrate. Alum powder is not painful. When you mix the powder with water, it makes a mixture that looks like sugar crystals. I will detail the Alum routine we followed later on in this post.

We noticed the red tissue was changing within the first few hours. We decided to place fresh mixture every morning, afternoon, and bedtime. We did this for two full days.

DAY FOUR: before Alum powder

DAY FOUR: after Alum powder (beginning to dry-up)

As the fifth and sixth days rolled around, the Alum powder mix was drying the tissue so much that we knew it had to be granulation tissue. Prolapse would not dry up and fall off.

DAY FIVE: after only 36 hour...
the Alum powder has dried the tissue enough to form a black scab

DAY SIX: after 48 hours of treatment (6 treatments)....
the black scab has come off and the raise granulation tissue is gone

The days that followed were fairly uneventful in terms of healing.

DAY SEVEN

DAY EIGHT

DAY NINE

DAY TEN

We are still seeing some occasional drainage. If it continues to drain by next Friday, we will need to call the surgeon for a closure. As far as granulation tissue, it seems to be gone. We haven’t seen any raised, red areas with bleeding. We are hoping that it will not return.

ALUM ROUTINE

What you will need: Alum Powder, Water, Proshield/Skin Protectant, Q-Tips, Gauze, Bandage/BandAid/Dressing




1) Mix Alum powder and water until mixture is like little sugar crystals 



2) Dry stoma well with Q-Tip
3) Place Proshield or other skin protectant around the stoma with a Q-Tip. Make a large halo. 




4) Scoop Alum mixture with a Q-Tip and pack it heavily over the stoma and place a 2X2 gauze on top 



5) Place a bandage, bandaid, or special dressing overtop to keep the mixture in place. We like CoFlex because it sticks to itself with a little pressure, but does not stick to the skin. There are other companies that make this bandage. Vets often use this product for animals, so it is easy to find at pet stores as well. You can use a single-width band, or a double.







Today is day TEN. We started using some Alum powder mixture again today to help dry out the remaining areas that are healing. Not everyone will see progress with the Alum powder. It was not medically recommended by a doctor. I know many Dr. Moms that used this treatment very effectively. I do know of one who had a negative response, creating more bleeding and irritation. If you chose to use this method, please know that I am NOT a doctor, and I am not in a position to give medical advice. Every person will be different. This is what worked for us.

It is worth mentioning that we spoke to our surgeon briefly about this treatment. They, of course, are not able to recommend Alum treatment because it is not medically founded. They did tell us that any new, growing tissue is called granulation tissue. In theory, this could mean that Alum powder could inhibit new tissue from growing and closing the stoma. It has been our experience (and many children) that the Alum powder helps dry up and heal chronic, large areas of granulation tissue..... and has not prevented the stoma from healing and closing (so far). In fact, I think the Alum powder has helped escalate healing.

MOVING ON....

We are still living in disbelief that the tube is gone. I find I am still skirting around the site like I might rip the G-Tube out. While we need to be careful with the healing stoma, at least it is flat now. We don’t have to worry about a G-Tube sticking out and catching on furniture or clothing. It is also a wonderful feeling to pick him up and place the left side of his stomach against my side. You may not think twice about it if you have never had a tubie...... but you have to always be aware it is there. When you hold a child with a tube, you cannot brush it against you because it will tug. It is an odd sensation to not worry about that. (I even held other children like they had a tube that I might rub out.... it becomes a default setting in a tubie-momma’s mind.)

We are very happy to share this wonderful experience with everyone. There was never a guarantee this day would come. As time moved on, we seemed to get closer and closer. I never would have thought the doctor would say those words last Friday. It was a beautiful sound. In my heart, Ian will always be my tubie.... tube or no tube. I know that sounds silly, but I bet I’m not the only tubie-momma to say that! Thank you for sharing our journey. Your support and unconditional love are overwhelming. You have been there through it all and we are glad to rejoice with you in this next step!