Do or do not, there is no try – Yoda
Well, I had been working on this post for a few weeks (Sharing the laptop with a college student whose workload is primarily internet based requires some creative problem solving) but then I went to finish it up and it had vanished. Apparently someone forgot to save as a draft before someone else got their hands on the computer. Whoops. So here’s the run down of that post, which I guess wasn’t meant to be, and the current news on all things regarding our own Jedi Connor.
As you probably know by now if you’ve been reading the blog, Connor has an NG (nasalgastro) feeding tube. We’re going on three weeks I believe with this horrid thing in place, and we’re in the middle of our seventh week at Kartini. (More on that later.) This tube has really been the bane of our existence from day one. The car ride home that day was an emotional one full of demanding questions like “Why did you do this to me?!” accompanied by tightly clenched fists and groans of frustration. There were tears, and great gulping sobs, and in between all of that was even the occasional, “I love you mommy and daddy.” We had to be trained on how to use the equipment (and there is A TON of equipment – my house looks like a mini hospital) and then the equipment didn’t all work properly which caused Connor to throw up the tube only three days after he’d gotten it. So we replaced the tube AND the equipment. He’s had to deal with insane constipation because the supplement he’s on lacks fiber and because of his tethered cord he battles this daily anyway. THAT required a trip to the ER and a massive amount of Miralax, which then caused problems on the other end. This past weekend the tube was once again displaced by Connor simply crawling on his hands and knees as he looked for a piece of his Halloween costume. The end of the tube got caught under his knee and as he moved forward he yanked it out. UGH! On top of all of that our little guy is doing everything he can to just eat with a tube running down his throat. And as for Dane and I – BOY! HOWDY! Every evening after dinner, around 6PM we prep his supplement and get him all hooked up. The IV bag (Dane hates that I call it that because it isn’t technically an IV bag, but it looks just like one) is disposable, and we have an entire case of them taking up valuable space in my living room. The supplement comes in little cartons which we also have several cases of. The bag only holds about two and a half cartons at a time, and over the course of the night he is to take seven cartons through the tube. So that means we get to stay up until about midnight (if we get things started on time) to refill the bag each time it gets low, and make sure he gets all seven cartons. Connor is also now on a medication for anxiety which makes him very sleepy. We give him this at the same time we start his tube, but it makes it extremely hard for him between the IV pole and the meds to get out of bed to use the bathroom in the night. We have to help him with this as well. When he’s gotten all seven cartons, the pump sounds an alarm, which is obnoxious, usually between 5:30 and 6AM. Then we’re up getting him unhooked, flushing his tube, and starting our day etc. We are all of us very, very tired.
The bright side of this (and yes there is a bright side) is that it’s all working. Progress is really slow, but we are seeing improvement. I need to stress here again, that this is a mental illness we’re dealing with, and it’s NEVER going to go away. Connor will live with this for the rest of his life. He will go into remission (and that is our goal) and much like diabetes he will learn to manage it, but he will never be “cured” of it. Having said that, Connor is steadily gaining weight, and at 66 pounds weighs more now than he ever has in his life! He still struggles with eating, and as we close in on the approximated 8 week end of treatment we are all realising that we will be at Kartini for a while yet. We are working on getting him to that goal weight of 68, and it feels within reach and I have to fight the urge to just jump for it. Because the reality is, that even as he hits that goal we still have a long way to go. Getting to a goal weight, and progressing through the goal weight are two different things. He has to learn to maintain his eating habits, as we slowly dial back the tube feeding. And man is he fighting that ED trying to tell him he doesn’t need food! We are in this with him and yet cannot fathom the struggle he faces at every single meal. I know there are minutes, hours, days that he feels like giving up, almost does give up. Yet he’s still in this and he’s still fighting, and the best part is, he’s WINNING. Every day he pushes forward, slow and steady, he’s winning. He’s not trying to do this, he IS DOING this. Because there is no try, he either does the hard thing every day, or there is the alternative. We don’t chose to go there. Jedi Master Connor, is a powerful Jedi indeed. May the force be with him, always.