I haven’t posted in a while, I’m sorry.
A lot of it has to do with I don’t know what to say. Then I sit down and the words just trip over themselves to get out and the posts make no sense.
But, today I started out my day with a good cry. I have been sharing a lot more of our Cyclic Vomiting Syndrome journey then we used to. There are things that I haven’t told any one. That a lot of people didn’t know about. Heck, most people don’t know I have a blog. This is my way of sharing.
So this morning, I shared a part of that, that I haven’t shared. The feeding tube. The feeding tube was traumatic. Probably more so because Chewy would know what would happen. He had shared a room with a kid that had to have one.. and although the parents were asked to leave the room, the same courtesy was not afforded to us. So Chewy had to listen to that kid scream, cry, plead, struggle, gag, fight and eventually vomit during the process. Imagine his horror when at another inpatient, they kept suggesting that he needed the feeding tube. He was adamantly against it.
He was eventually over ruled. The doctors, a team of around 40 of them, consisting of Gastroenterologists, Neurologists, nutritionists, Pediatricians, you name it they were there, all agreed that his organs were failing and his body was showing signs of shutting down. The best way to reverse what was happening was to get him nutrition. He was not strong enough to go through surgery for a port. The PICC line had not worked. The NJ tube would be the best thing for him. I knew they were right.
I let them come in and put the tube in.
He had asked me for days to promise that I wouldn’t let them. Each time I told him I had to wait and see what happened. He still swears I promised.
So, when the nurses came in.. it was the worst experience of my life.
Not only did I have to help hold him down..
But, He screamed, “I hate you, I hate you, I hate you..” over and over and over while giving me the stare that conveyed the thought more than the words.
Then, he started to cry and tell me, “but, you promised.” Gagging as they forced the tube down. My heart shattered.
One of the hardest decisions that I have had to make as a parent. I would do it again in a heart beat.
Does Chewy hate me?
Probably. Because I nag him everyday.
Does he hate me for that?
Yes and no. We have talked about it since then. A few times, because let’s face it.. It is not anyone’s favorite moment. But, I think we needed to clear the air. He knew it needed to be done. That there wasn’t another way. He just wishes there was. As do we all.
Becasue of how long his episodes can last, they have told him that the feeding tube could happen again. Luckily we have found something that lessened the episodes and haven’t had to go through that again.
But, this is just one thing that set off my thoughts this morning. Some of our worst struggles were in October and November. So it is hard not to reflect on that each time October rolls around.
It is, however, very nice to know that, that was almost 4 years ago. That we are not there anymore, struggling for answers or help with our care or direction. That with the care we are getting Chewy hasn’t ACTUALLY thrown up in almost two years! He still struggles with severe nausea and horrible migraines that we have to keep in check on a DAILY basis to keep that record going.. but, we have the medical help necessary to do that. Not everyone can say that.
Today, I wish you all well with your Medical Adventuring!