Cha, Cha, Change! or Goodbye Feeding Tube!

Ellie having a lavender foot soak on her Winter Break

This last 6 months has been a time of intense change for us all and for the better. On October 22nd of 2013 Ellie got her g-tube OUT (for good if I can be so bold to say that)! AND on November 4th she started at a new school.

When Ellie was born our wonderful neonatologist Dynio said that Ellie will present her needs. That concept stuck with me.

Me and Ellie playing her Paper Jamz guitars

Ellie's g-tube was always a nightmare of leakage, skin breakdown, and intense management. It progressively started popping out more and more. I tried it all, taking it out for a little time (actually over night) to see if the track would shrink a bit. Taking her to the doctor to see if they could surgically make it less leaky. We are lucky to have a dear friend who is a wound care nurse par excellence so we have been able to manage her dressing at home and avoid the initial yeast and fungal infections that occurred when we were still in California (another benefit of having moved to Boston). But it was coming out more and more and we were changing our elaborate and expensive dressing on it several times a day. They had to do this in school too. And it was constantly leaking.

 In February (this time last year) it was popping out once a day and Ellie's physical revealed low vitamin D levels. I upped her vitamin D and other nutrients and in April got an appointment to see a GI doc to see if there was another type of G-tube that would work better. It had started popping out twice a day. And for those of you who have not lived that - it's awful. Ellie is in pain because stomach acid burns the exposed skin around the tube which was like an open wound all the time. And she loses whatever meal she just ate and you have to transfer her, lay her down, and clean and redress the site, insert a new g-tube (into her stomach) and get her washed and dressed in new clothes. The whole thing can take a good 30 - 40 minutes as you try to distract Ellie who wants to scratch her stoma area because acid on skin hurts and itches. Super fun. So when we went in April we saw a nurse first. She asked me to show her the site. I got Ellie onto the table and asked the nurse for some towels. She was surprised by this. But she got them. Me and the nurse I brought with me then proceeded. I cut off the dressing and my nurse positioned the towels to stanch the deluge of stomach fluids that would ensue after I took out the Mic-Key Button so the nurse could see the site.

When the GI nurse saw Ellie's stoma she shrieked (not exaggerating here), "OH MY GOD! OH MY GOD! It's a hole! It's an open wound! OH MY GOD!" I started to explain how hard we have worked to keep Ellie's skin clean and well cared for and that the tube leaked from the beginning and that we have had to limit Ellie's PT and body Jacket and every thing to protect the site. She kept saying Oh MY God! At which point I started to cry feeling very bad. She then said, "You guys have been going to heroic measures to care for this! The skin around her site is remarkable and perfect! But her site is a hole, there is no track." I said that I had thought so but that Ellie's old GI Dr. had not mentioned that during the last exam. She calmed down once I started crying and I calmed down too. The doctor came in at this point and we decided to try a different tube and see them once a week to follow it. Long story short we tried the tube and it worked a little better but not much.

 The whole incident with the nurse losing it was actually a wake up call for me.

We had been going to heroic measures. Me and Dave and Ellie's teachers and the carers we have helping us in the home. Our quality of life was very negatively impacted, Ellie's most of all by this. Ellie had been doing great taking sips of liquid from her amazing speech therapist Katie. AND she had been eating all her purees for several years now. I realized that maybe she was presenting something new to us. Presenting that it was time to get rid of this awful, painful wound.

I presented this idea to the head of GI at the hospital and he said that if we close up this site and then put another feeding tube in a different spot, there was no guarantee that her skin would not do the same thing. He later retracted that because I think for a doctor it's a huge risk to encourage a parent to get rid of their kid's feeding tube when they have a history like Ellie's.

However, Ellie was doing well with her drinking and a nutritionist had told me there were kids with no feeding tube who did not drink and were OK. Note this was not my goal - I want Ellie to drink. I knew that all the time we had spent changing her dressing and managing her site would now be spent on working with her to drink.

Nosey Cup

But isn't that time better spent? We spent over 12,000 hours getting her to be able to eat and her glowing skin, hair, and growth rate, alertness, and lack of colds (and normal elimination) is a testament to the goodness of having done that. Also, there are cups everywhere that you could make into a nosey cup by tearing or cutting it. There aren't g-tubes and Allyven pads, and Hy-tape everywhere or people who could even handle dealing with Ellie's site. My goal as her mother who loves her is that she be as independent as possible by the time I leave this world and that includes not being dependent on expensive medical supplies (if at all possible). Note, I am not knocking those supplies or the tube - they saved her life. BUT if there is a choice point that involves more work for me but provides an ultimate benefit for Ellie, I am going to go for it.

In the several months before the surgery we worked and worked on getting Ellie to drink. We all (school personnel and Dave and I and our home carers) used spoons and the nosey cups. We had enough experience with feeding Ellie that we knew what to do. It was an adjustment for all of us. Giving someone liquid in a cup is difficult enough. Now factor in someone who moves her head from side to side and has a slight oral aversion. We started by thickening apple juice with apple sauce. But because apples are so hard on the teeth I now give her other things to drink. One is her cantaloupe and coconut water juice I make her myself.

Ellie's Hydrating Cantaloupe Water Recipe:

1. 1 cantaloupe
2. 1 100 ml or more of coconut water
3. 1 pinch sea salt
4. 1 tablespoon of agave

Direction: Take 1 whole cantaloupe seeds and skin removed and blend it with one big carton of coconut water along with a pinch of sea salt and a tablespoon of agave (optional).

Ellie loves this and it's very hydrating and cantaloupe is easy on the teeth. I also give her my green juice too which she loves! I make Kris Carr's Make Juice Not War juice (Google it). The other thing is that Ellie eats purees all day - not dry crackers or cereals or dry anything. There is liquid in her meals. I do worry about her getting "free water" but for now she is hydrated. Though the doctors would have liked to see Ellie drinking 1,000 ml's of liquid a day, we did the operation when she was at about 300 cc's per day. Which is pretty good as we started at 0. A critical factor was that she would eat her meds that we mixed into her purees.

Ellie on New Year's Day 2014

On October 22 we had the operation. The surgeon told us we would be in only overnight but because he realized Ellie's shunt cables drain into her abdomen and because her site was so bad (the stomach lining was growing outward..!) he did some extra things to ensure closure and that her stomach contents would not leak into her abdomen compromising her shunt. We were in from Tuesday to Friday with Ellie on morphine and in a great deal of pain the whole time. Not fun. Poor Ellie. I remembered it was rough for her to get a tube and for my little girl, equally rough getting rid of one (which is so NOT the norm - typically they close on their own). I am not sure what her karma is in this life, but she has some extraordinarily challenges. Full recovery took about 2.5 months.

Today she is eating slightly less than she did with the tube (but not losing fluids and whole meals either).  She is drinking about 400-500 per day, and hydrated and moving her bowels much, much better, and her vitamin counts are all excellent. She was losing so many nutrients and calories every day right out of her tummy. Now she is keeping it all in. She still has reflux, but it's much better too. The green juice is still a huge factor in her being less acidic but she also isn't taking air in through her belly anymore. We were also able to get a body jacket (spinal orthosis) that actually works because we don't need a big hole in it to accommodate her G-tube.

Most of all, Ellie's quality of life is much, much better! She is in far, far less pain. She is able to concentrate much better without the constant itching and pain of the tube. For her 11th birthday she got her tummy back. Can you imagine how distracting having a feeding tube that hurts all the time was for her? I think about when I get a cut in my finger and how it can be slightly distracting when it's fresh. A leaky, painful feeding tube would be magnitudes worse. Every time I see her smooth yet scarred belly I have to kiss it. She had to be really brave to drink because liquid is really fast and scary to deal with if you are hypotonic and have dysphagia. Ellie works as hard as we work with her and the results have been worth it.