Tube Trauma, Part 2, and the Back Story of the Feeding Tube

A few days ago, right at the start of our oldest son's first debate of a 3-day tournament, I looked over at a peacefully sleeping Verity who was at the start of her 8am feeding session. Something was wrong, though, when I looked at her face: her feeding tube had come out! What in the world?! I had just set up the pump a few minutes before, and though I had not seen any flailing limbs, there lay the end of the tube, with the weight that is supposed to be in Verity's stomach resting on her chest while milk dripped nonchalantly onto her clothing.

ACK!

Unlike the last time this happened (March 18, the day after we got discharged from the NICU), this was at the very beginning of a feeding instead of at the end, so time was of the essence. I called Ted at work and rushed away from the tournament site, headed to the children's hospital. We were quickly admitted to the emergency department, and I explained our whole feeding tube saga to the team there--the last time this had happened, we went to an ER at the medical center closest to our house. But as Ted wisely pointed out, we had an afternoon appointment at Children's Hospital anyway to get Verity's second set of casts...

Doesn't she look pleased with herself?!

Anyway. We hoped that perhaps we could get different tubes and get trained on how to put them in ourselves; living in paranoia that this 30-day tube might come out is fairly stressful. The staff was sympathetic to our plight and did all sorts of checking...but...we ended up watching as they put in yet another 30-day tube, this time in her left nostril, which was noticeably smaller than her right. Time to even them up! After we went to X-ray to verify that the tube was placed correctly, we were able to start her feeding again--by this point it was 10am, two hours after the feeding originally began, and Verity was NOT happy with being put on hold! (I did attempt nursing her during our waiting times...)

The staff had arranged with the orthopedic clinic to get us in sooner than our scheduled appointment, and while we did wait for a little while, we were grateful to see the doctor at 10:45am instead of 12:45pm. While we were waiting, I got a phone call from the case manager, who had been working on our behalf to dig up some information about feeding tube training for us.

So, here is the back story of The Feeding Tube Issue for all those who are wondering, "Why don't you just put it back in yourself?!" or, "Why didn't they teach you how to do that?!"

On March 10, for reasons I did not hear directly from any medical staff, the NICU team decided to place a 30-day feeding tube in Verity. I honestly am not sure why we weren't consulted as to using this type of tube vs. the smaller tubes that parents are typically taught how to insert and change out themselves, but from what I have heard since then, the intentions were good: the doctors thought that it would be helpful for us, since the nurses were even having some troubles inserting the usual tubing. Then, the tube was supposed to be secured with a bridle so that it would NOT come out. This sounded good; when the plan was presented to us, it did give me a measure of relief that I wouldn't have to be the one dealing with the tube insertion. I had no idea what a bridle was, but everyone seemed confident that this was a good plan for Verity and for us as her parents. It didn't occur to me to question it, and as I said, I truly believe everyone had our best interests in consideration.

Well, the bridle was a no-go. Despite being a "micro" size, it was still way too big for Verity's little nose. By this time the tube was placed, however, and so everyone agreed that we'd simply use that tube for 30 days (HAHAHA!!) and then see what happened from there. Later on I learned more about the bridle and am SO thankful that Verity does NOT have it "installed!" Good grief...look at this photo...it's a grown man! Even with this being the smallest size, can you imagine that clip at the end of Verity's tiny little nose?! And how in the world would we even attempt to nurse?!

So that's the story of how we got the 30-day tube in the first place. The first 30-day tube lasted 9 days before coming out, the second 17 days. I'm not convinced we will make it 30 days!! And this, of course, is why we asked the team in the Emergency Department if they could just help us switch.

And this is where things had to be untangled. As the case manager worked with me over the phone, calling me in between calling various parties, the complications became apparent...

* March 27: We had asked our pediatrician about switching feeding tubes; he agreed that it was a good idea and said that would be something to discuss with the GI doctor, to whom he had referred us for an appointment ASAP.

* April 3: The GI doctor agreed this was a good idea; however, he said this is something the home health care providers take care of; whoever trained us on the feeding pump and keeps us supplied with our feeding tube bags and other items, then, would be the ones we should contact.

* April 5: The case worker at Children's Hospital makes all kinds of phone calls. She learns that the home health supplies folks do not, in fact, do feeding tube training at all. Our pediatrician's office doesn't do anything of the sort either (primarily, of course, dealing with children who don't need feeding tubes). She also called our insurance to see if they will cover a home visit from a nurse to train us. They won't.

Bottom line: This training is supposed to be done IN THE HOSPITAL BEFORE DISCHARGE BY A BEDSIDE NURSE!!! Obviously we never got the training because...everyone assumed we didn't "need" it since the 30-day tube was placed before we went home.

Sigh. It's simply a huge mess of communication problems. Everyone means well; I believe everyone has truly been trying to help us. But now that we are out of the hospital, no one wants to step in and take responsibility for something they aren't sure they are supposed to be doing. We just need a bit of training! We just need to get the tubes ordered and be able to start using them!

In the meantime...the current 30-day tube is as secure as we can make it, and Verity is doing just fine. We have another appointment with our GI doctor on April 17, and the case manager put in a plea with his office explaining our situation. We haven't heard back from them (they did call once to verify some details), so I don't know if the doctor and/or his office staff will be able to get us this training or not.

So. That's the story...and now I must attend to Verity and hopefully settle her back down so we can both get some sleep tonight!