It has been almost a year since Corrigan had his PEG tube removed and his Mic-Key button “installed.” In that time we have had zero problems with tube feeding and it has been a tremendous asset to Corrigan’s care. We use it many times a day, often just a syringe of medicine followed by a flush of water, but sometimes I use it for entire feedings that he refuses to take by mouth.
While I have no desire to rush the removal of the g-tube, my goal is always the same. I want Corrigan to take all of his allotted protein and calories by mouth. Actually, I am not sure that even if Corrigan did begin eating normally I would advocate a removal of his g-tube. He has not been “sick” in a long time but he begins school this fall and will be exposed to many new germs and viruses that his sheltered immune system has never encountered and when he does catch something, that g-tube will likely be the only thing between weathering it out at home or an emergency admittance to the hospital.
Over the last few weeks though I have noticed small steps towards “normal” eating with Corrigan. He will go into the pantry now and hand the food to me while saying, “eat?” He will find an empty cup and tell me that he wants a drink. When he smells food cooking in the kitchen he will come out and look up on the stove, or counter, to see what I am making. When dinner is on the table we call him to dinner, announcing that it is time to eat, and he immediately stops playing and comes out to sit at the table. He may not stay the entire meal but he will join us while we ask the Blessing and will eat a bite or two before running off.
If we are having pizza or spaghetti he will not leave the table at all. This delights me but frustrates him because these foods, while delicious, are not super great for low protein diets. A tiny sliver of cheese pizza was calculated (based on the nutritional label and the food values book) at 4 grams of protein. For a child that only gets 21 grams total per day, this hardly fills him up but takes a big chunk out of what is left for the remainder of his 24 hours. There are low-protein, medical foods, that we could order but I am hesitant to place a big order (our insurance requires a minimum $500.00 order-4 times a year) when he could just as easily decide he isn’t going to eat for another 5 months again.
In the last two days his appetite seems greatly improved though and yesterday he ate ALL of his total protein and calories by mouth! This has not happened once since he was an infant and I was spooning baby food into his mouth. Normally he only eats a few grams of what is assigned to him and then I use drinkable yogurts, and Pediasure, to supplement (usually during his night pump-feed) what remains. There have been months where he will only consume a single gram of protein through solid foods in a 24 hour period. One gram. Ridiculous.
Yesterday’s 24-hour period saw Corrigan eating Tombstone pizza, a half-serving of Doritos, a serving of yogurt-covered raisins and some gummy bears. He also happily drank some healthy fruit juice out of his sippy-cup instead of soda.
I am not sure if it coincides or not but Corrigan has also slept through the night for the last three nights as well. He has been fighting his bedtime though, so instead of his normal 8:30pm he has been playing and kicking his bedroom door until 10:00pm or so before falling asleep. He sleeps until around 6am without waking, not even the beeping of his finished feeding pump wakes him.
He slept through the night before he had a good eating-day though. It would make more sense to me if he had a good eating day and then slept through the night but instead it was a bit backwards. He slept through the night and then began eating well. Whatever the reason, I was happy to see him asking for food, eating the food that was measured out, chewing successfully without struggling or spitting it out and sometimes even asking for more.
Corrigan’s foods these days are: Strawberries (his favorite!) Bananas, yogurt-covered raisins, any chips that are spicy flavored, french fries, pizza, spaghetti, any kind of gummy treat, yogurt and we really have to hide the chocolate.
With the recent sleeping and eating changes have also come some undesirable behavior changes. It is easy to tell the days that Corrigan has had a nice 24-hour period full of carefully measured natural protein (eaten by mouth) or if his diet has been mainly liquid and supplemented by prescribed Pediasure. On the days that he takes his nutrition through Pediasure and liquid yogurt, he is more likely to want to just watch videos, or sit and play with his toys. Not a lot of running around when he is drinking the stuff from a can. However, I have noticed that when he chews his nutrition, those solid, natural foods by mouth, he is far more energetic and way more likely to get into mischief.
When he has the energy to play I imagine his frustrations at his verbal limitations must make him so angry. He barely gives me a minute, between clearly trying to tell me something and me comprehending what he might be asking, before arching his back and screaming in frustration. His personality is a lot less easy going when he sleeps well and eats normally. Yesterday, at therapy, he was pretty much a tyrant and the therapist was shocked when I corrected her assumption that he must be having a bad morning because he had a bad night. He actually slept 8 hours the night before. And 7 the night before that. With naps!
Yesterday, we pulled him out of the upstairs shower three times, he was fully-clothed and only the hot water was running. He was punished all three times and it did not faze him. Had I not reluctantly gone to Walmart to buy safety covers for the doorknobs, I guarantee that he would have tried again. It really stinks to be buying baby safety gear for your three year old. We should be ready to take these items off , not buying more, but we have to be safe. He has been hyper and immune to consequences, even if those consequences are injuries he gets from making bad decisions. He behavior these last days definitely seems more aligned with his developmental age of 20 months rather than his actual age (36 months). We are heading into the terrible-two’s at three years old. Someone hold me.
I suppose I should be thankful that I am getting more sleep to help deal with the tantrums and mischief. It would be a lot harder to get through these challenging behavior days if I was operating on only 2-3 hours of sleep. I suppose I have to exchange better behavior (which is probably just lethargy disguised as a more obedient child) for good eating habits and restful sleep for more typical toddler behaviors…most of them challenging and not always positive.
Either way, Corrigan is shaking things up around here and keeping me on my toes!