Sunday, May 8, 2016

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!

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