As we were leaving Sebastian’s nutrition clinic the doctor said ‘You are doing a good job. But you can do better.’ Um, thanks?
I bit my lip to hold back the tears. I felt defeated. Again. It had been a tough week and rough couple of days especially. Of course he had no idea what we are going though right now. Not many people do.
Never mind that he arrived at the appointment at the end, after I’d argued with the nutritionist about Cisepride, a drug that was taken off the market in several countries because it can kill you. And to use it in Canada you have to get an EEG and special permission. Probably sign a waiver too. Never mind he was just poking his head in and came to make sure that he could tick all the boxes; ‘Has Sebastian been to the eye doctor, has he been to the dentist? Is so and so still his neurologist?’ Then looking at his growth chart. Never mind that Sebastian grew 5cm and is bursting out of his wheelchair again. His weight increased but not enough. It is never enough. And apparently it is my fault.
Four weeks ago Sebastian was in the ER getting diagnosed with strep throat. He couldn’t eat for a week. I have him a fully organic blended diet, made by me, via gtube. Meals approved and calories checked by another nutritionist. I increased his feeds since his throat hurt too badly to eat. The antibiotics were extremely painful for his stomach and he couldn’t sleep for almost the full week either until we switched them so even the food by tube was intolerable at times.
I feel incredibly proud and happy that for four weeks Sebastian has had a fully blended diet. He’s also eating orally again. And he’s living without constipation naturally. He goes through bottles of flax oil, avocado oil, and coconut oil quicker than I replace one bottle of olive oil for the whole family. His blends include coconut milk from a can and avocado. Plus countless veggies and various proteins. There are carbs in there too like quinoa, cous cous, and rice. I was actually looking forward to his weight check because I thought it would be higher even despite his illness. And it was. But not enough.
I can do better.
I’m going to wave my magic wand and his reflux will be gone. That’s it. Because I can do better. I’m going to stuff him like a turkey until he’s bursting. Because I can do better. I’m going to hook him up to a tube to feed him all night. Forget sleep. Never mind that his reflux and gassy tummy will keep him up all night. Seizures smeezures. Because I can do better.
They have been following Sebastian since we moved here. 6.5 years plus. First they offered Duocal. We used it despite the reflux it caused. Then they pushed for a g-tube and when we finally got it they pushed Neocate formula even though I asked for help with a blended diet. They offered Pediasure and other enhanced formulas that Sebastian can’t tolerate because he can’t have dairy and soy. They offered Miralax for constipation. They increase his Prevacid and talked about adding another medicine to help with motility. One makes him lethargic and the other one could kill him. They just push this and that and tell me more more more. Add more oil. Push him til he pukes. Because you can do better.
Why can’t THEY do better? Why can’t they find out what is best for my son without just pumping him full of corn syrup solids and medications? Why can’t they fix his reflux? Why didn’t they fix his constipation?
Guess who did?
For four weeks Sebastian has had a fully blended diet by tube. He has had no reflux from food intake and no constipation.
I do my best. Every day. And every night. When I’m blending food and separating it into glass jars to freeze. When I’m waking up early to get his pump ready and prepare his food for the day.
When I’m lying awake thinking about the list of things I will do tomorrow to make my son’s life better. Ticking all the boxes in my own mind.