In September, as Quinn started preschool, we discovered that some of the kids were asking Quinn about his feeding tube. When he would raise his arms his little belly would peek out from under his shirt and you could see a little white button on his belly. Quinn wasn't totally comfortable talking to the kids about it so his teacher asked if I would come in and share about the "extra bellybutton".
I asked Quinn if he would help me teach the kids about his feeding tube and he was all about being in charge :) So together we talked to the kids about things we need to make us healthy. Things we use to do that...like tennis shoes, a band aid, glasses.
And for Quinn...a feeding tube.
We have a special teddy bear that has a feeding tube too that Quinn could show the group. Quinn showed the group his tube too but we also discussed that Quinn could say no if someone asked to see his tube. Good to think about the power of choice. It went well. I think that Quinn felt empowered to answer questions or say no if he was uncomfortable.
The feeding tube. Sigh. This has been quite a journey. Not everyone with Cystic Fibrosis needs a feeding tube but everyone with CF needs a LOT of calories. The short version of the Quinn/Calorie story is this:
Quinn spent the first 18 months of life with undiagnosed acid reflux. He was always throwing up his milk. He was never very interested in eating thought he always had a ton of energy. He had mild dysphagia (difficulty swallowing) which also complicated his eating issues. Even though we were finding as many ways as possible to increase his calories with what he would eat, it was never enough. Once Quinn got on reflux medication, things improved but never resulted in major caloric intake.
We've met with two food therapists, an occupational therapist, and seriously considered taking Quinn to two different food therapy clinics. I've read a number of articles on food issues and suggestions for improving food interest, volume eaten, and interaction with food.
Sigh. I love to eat. Ryan loves to eat. Sela loves to eat. Quinn does not. Thus, the feeding tube. While I cried and cried about this decision, our medical team highly recommended it and we really saw no other way to get Quinn the calories he needs. There is a HIGHLY significant correlation between nutritional health and lung health so experimenting with a lot with other methods was not a risk we wanted to take.
For me, the feeding tube felt like I had failed Quinn. I was his primary caregiver and I couldn't get him what he needed. I associated feeding tubes with people that were dying and could no longer eat. My anxiety was very high about the tube. It meant a surgery for Quinn. Not a thrilling prospect. But we decided it was the best decision for Quinn in the long run.
I think it has been the best decision. All of the drama around food GREATLY decreased. Knowing that he would get calories at night while he slept meant the tug of war around food and trying to get him to eat more could subside. He would eat what he could eat and then the night time feeding tube feed would supplement what he had already consumed.
So now, Quinn gets 850 calories at night of formula. When he goes to bed we get his pump set up, flush his tube with some water and then attach all the necessary cords. It typically runs from 8PM until 2AM or 3AM. I set my alarm for 2AM, turn off the pump, and disconnect the cords. From the start of the pump until the end of the feed, Quinn can't just get up and walk around. If he needs to get out of bed to use the bathroom then he has to call for us so we can pause the pump and disconnect him.
Sometimes the cords come detached from his tube...and then we just have a big formula mess all over Quinn and the bed. Or if Quinn coughs in the night, this can sometimes trigger him throwing up.
Quinn is resilient. He doesn't always love having to be connected to cords at night but he is SO cooperative and patient with us. He has figured out how to move around his bed, how to get comfortable to go to sleep, or tease us if we spill water on him while we're flushing his tube.
It is painful if the tube is pulled and it is uncomfortable to him when we have to replace the tube. But again, he is so resilient. While I wish Quinn would eat 2000 calories a day on his own, I'm thankful that a feeding tube is possible. It is helping him get the calories he needs and that is essential in this journey with CF.
If you would like to help Share the Love for Quinn you can donate to CF research with Team Win with Quinn.