Sunday, May 8, 2016

No more tube!

Friday April 22 finally arrived. This was the happy day that Elsie's gtube was permanently removed! After speaking to our GI doctor late Thursday night and finally receiving permission to remove her tube, I was so excited that I almost wanted to wake her up and take it out right then. But I restrained myself and somehow waited until morning. By some cruel irony, that day just happened to be a rare morning that Elsie slept in until after 9am, haha. She finally woke up and I waited until she had used the bathroom and had a few bites of breakfast before springing the good news on her. 

Our feeding therapists had both warned us that removing her tube might be a little traumatic for Elsie. After all, she has never known life without it. It is a part of her body as much a finger or toe is, so to suddenly remove it might be hard on her. Not painful, mind you, just different and strange. We have been talking with Elsie for the last few months about when she gets her tube out, and talking about how she doesn't need it anymore, but I don't know if she really understood that it would be coming out, for good. So I was a bit apprehensive that morning when I collected all of the supplies I would need to take her tube out. Some parents with tubie graduates suggested having a new, clean gtube available to put into a stuffed animal or doll if the child was upset about losing the tube from their body. I grabbed a new gtube button, a few pieces of gauze, some medical tape, scissors, and a syringe. 

This is what Elsie's Mic-Key gtube button looks like:

The feeding port and balloon port are the parts that are outside her body. The stem of the gtube goes through her stoma (hole in her skin) and into her stomach. It is kept in place by the small, water-inflated balloon that is inside her stomach. The balloon, if properly inflated, keeps the gtube from being pulled out of the stomach. When you want to remove the gtube, either for replacing an old tube with a new one, or to permanently remove the tube like in Elsie's situation, you take a small syringe and attach it to the balloon port. You draw all of the water out of the balloon, and the balloon deflates and shrinks in on itself, and all you're left with is the narrow stem. The stem is easily pulled out of the stomach because there is nothing holding it back now that you've deflated the balloon. It's actually pretty easy to do. 

Once I had all of the supplies ready, I sat Elsie and Evje down and explained to them that the doctor told us we could remove Elsie's tube. I tried to make it a positive, exciting thing. I could tell Elsie was a little bit wary, but with my excitement and Evje's help, she let me lift up her shirt. I deflated the balloon inside her stomach, and gently pulled on the tube. There was a small amount of resistance, but then it came right out. I cleaned her stoma with some water, then rubbed some Vaseline on the surrounding skin and taped a piece of gauze over it to contain any stomach contents that might leak out. We cheered and celebrated, and took many pictures of the special occasion. I offered the new gtube button to Elsie and asked if she wanted to put it in one of her dolls or stuffed animals, but she said "No, I don't need that anymore!"

Last picture of the "tummy tube"!

It's out!

Generally speaking, a gtube stoma closes quite rapidly if the gtube is not in place. It's like when you have your ears pierced, but you don't wear earrings for a long time, and the hole closes. But with a gtube stoma, the closing of the hole happens a lot more quickly. If a gtube is ever accidentally removed, it is advised to get it back in within 20 minutes of removal, because it really does start to close that quickly and becomes very difficult to get back in without medical help. Elsie has had her gtube for almost 3 years, so there was some concern that her stoma wouldn't close all the way on its own and that she would need a surgeon to stitch it shut. However, Elsie's stoma has always been very clean and never irritated; she never had any issues with granulation tissue or other problems that might delay the healing of the stoma. I was pretty confident and hopeful that it would close on its own, but I kept a close eye on it for the first several days to make sure that there was no stomach acid leaking out and that Elsie's skin was protected. 

24 hours post-removal

It is now more than 2 weeks post-removal, and it appears that her stoma is completely closed on its own! She had a very very small amount of leakage during the first hour or so that the tube came out, but none since then. It looks like she has a second belly button where her tube used to be. We're so very proud of Elsie's accomplishments in graduating from her feeding tube, and we love to let her show off her tube-free tummy to all of our friends and family. I'm so happy that Elsie has finally reached this great milestone in her life! She is now free from all medical devices. All that's left is her scars, that remind us of all that she has been through, and all that she has overcome. Elsie is one tough little cookie!

Getting permission to remove the tube!

For some time now, we have been really wanting to take Elsie's gtube out. I wanted it out a month or two after we weaned from the tube back in July 2015, but our doctors were very cautious and wanted to make sure that Elsie could be successful without it. Some criteria for being able to remove a gtube is eating 100% orally for at least 3-6 months depending on the doctor, consistently gaining weight, and able to maintain hydration during an illness without needing to use the feeding tube. Most doctors also prefer the gtube to be left in during cold and flu season, because often a serious illness will cause the child to have a setback with eating and drinking.

Elsie has been eating 100% orally since July. We went through several colds and minor sickness throughout the winter, and then Elsie was hospitalized for 3 days in February for a respiratory virus. During none of these illnesses did Elsie need supplemental food or fluids through her gtube. She was even able to swallow medicine orally while she was in the hospital. The only factor that we were somewhat struggling with was Elsie's weight gain.

Elsie is like her older sister Evje, in that both of them eat enough to survive, but not a whole lot more. They eat to live, not live to eat. To my children, eating is sometimes regarded as a chore to get through before they can go play. They enjoy eating and they like food, but they often only eat enough to abate their hunger before they are off, burning more calories than they have taken in. Both girls are very active; non-stop on the go wiggle worms. It's not a huge surprise to me that Elsie's weight gain has been slow. BUT although it has been slow gain, she IS gaining weight. She has remained on her own curve on the weight chart.

After cold and flu season was over, I began to pursue getting Elsie's gtube removed. I wasn't quite sure who was the authority that had the final say on when it could be removed. Elsie's feeding therapists know her the best, but they are not doctors. Our new pediatrician is great, but when I asked about removing the tube at Elsie's 3 year well-check in January, he referred us to the GI doctor who placed the tube. This was frustrating to me, because we haven't been seen by GI since a few months after Elsie's PEG tube was replaced with her Mic-Key button ... so sometime in the fall or winter of 2013. At that time, he told us that he didn't need to see Elsie again unless we had problems with the gtube, which we haven't, so he hasn't even seen Elsie since she was like 9 months old. Why did he have the authority to tell us that we could remove her tube when he is so unfamiliar with her case? Who knows. The medical world is confusing and frustrating.

Let me just insert here that removing a gtube is not a complicated procedure. I have done it myself at home several times, because gtubes don't last forever and need to be replaced periodically. I was fully comfortable removing her gtube myself, and contemplated taking it out on our own and not telling her doctors that we had done so. The only thing holding me back was that if her stoma (hole where the gtube goes through her skin and into her abdomen) doesn't heal on its own, it would need to be stitched shut by a surgeon. And since Elsie has had her gtube for almost 3 years now, there is a stronger possibility that her stoma won't close on its own and would need the surgery. I've read a few stories of kiddos whose stoma did not close, and there was much leaking of stomach acid and breaking down of skin, and other really awful things. So while I rebelliously wanted to remove her tube on my own, I refrained.

In March or April, we had a lovely informal visit with our wonderful friend Helene, who was Elsie's feeding therapists previous to the tube wean. We had lunch together, during which Elsie ate a small bowl of tomato soup, two slices of French bread with butter, two cheese sticks, a few bites of Caesar salad, and a package of fruit snacks. It was awesome, and Helene was quite impressed. Helene and I discussed removing Elsie's tube, and she kindly volunteered to send a message to our GI doc, relaying how great Elsie was doing with her eating skills.

GI's response was that Elsie hadn't gained enough weight to remove the tube. The last time Elsie had been weighed was back in February ... when she had been hospitalized ... when she had been very sick. So yeah, at that time, her weight was probably down from what it normally was. Grrr.

At the end of April, Evje had her 5 year old well-check, and while we were at the pediatrician's office, I plunked Elsie on top of the scale to get a current weight. I discussed again with the ped the possibility of removing the tube. He was supportive of it being removed, and told me to talk to GI again, letting him know that our ped was supportive of the tube being removed. AND the last thing he told me was that if our GI doc did not agree with him that it was time to take the tube out, that I should let him know, and that he would find another GI doc to approve the tube's removal. Whaaaa?? Oh yes, this is so going to happen, finally!

I called GI that afternoon, leaving a message with the nurse, laying out all of our arguments as to why we believed her tube was ready to come out. Elsie had not needed her tube for eating or drinking since July, she made it through a 3 day hospitalization without needing her tube, and I told them what her current weight was and that our pediatrician was supportive of the tube coming out. This was on a Thursday afternoon, and I was not even expecting a response until the following week at the earliest. However, later that very same night, GI doctor personally called me! We discussed all that Elsie had been through and how she was succeeding. He said that now that he knew her current weight, she had gained enough for him to be comfortable removing the tube. He offered to set up an appointment to remove the tube in his office the following week, but I asked instead if I could remove it at home, to which he readily agreed. He let me know that they generally give the stoma a few weeks to close on its own, and to let him know if we needed a referral to surgery to get the stoma closed surgically. And that was it! We finally had our much-sought after approval to remove the tube!