Yesterday X went the entire day without feeling nauseas. The. entire. day. He even mentioned it at supper. That's how big a deal that is. The puke bucket sat, untouched for the entire day. What a gift.
X continues to struggle with reminders of procedures, mostly I.V.'s and blood draws, as well as the ng tube.
Last week we were stringing popcorn for our re-purposes Christmas tree.
That is my one re-purposed item I have. We place the tree in a bank of snow outside our window near the bird feeders, and make edible ornaments and decorations for the bird throughout the winter.
While stringing the popcorn, X poke his finger with the needle, (thankfully not hard enough to draw blood), he was okay with it initially, however after a few seconds he had a panicked look on his face and began to cry "it feels like a poke!!". Oh, X. It took a good 15 minutes to help calm him down. It's heartbreaking. I can see the change in his eyes and I know he's remembering stuff. I am going to call the Child Life Specialist next week. He isn't as panicked as he used to be with this kind of stuff, but it's still there.
The next day he threw up, and it was a bad throw up and his throat and nose hurt, which caused him to scream at the top of his lungs in a high pitched voice for 10 minutes. Whenever his nose or throat hurts he panics. This is from the ng tube. The tube irritated and hurt his nose and throat more than we knew. That is my biggest regret. That we did the ng tube first and used it for 3 months. 3 months. Initially I wants to do a g-tube, but we were told it was invasive and not a good choice for short term use (he was supposed to be eating within 3 months). I still struggle with guilt over that. I know we made what we thought was the best decision at the time and we used the information that was given to us and what we researched, but I feel bad. Those 3 months were not fun for him.
He keeps telling me that he does not want his "button" to come out when he is able to eat enough on his own. He is scared he will have a hole in his stomach and the stuffing his stomach will come out. He has been telling me this for almost a year. I wish he didn't think about things so much.
X is going to need his button changed soon. He has grown so much and gained so much weight since October, the button is almost to the point of being too tight. He has been complaining of it hurting a little during the cares of it. Oh, I don't want to have to do that to him. I was hoping we could wait until April. This time we may have to give him the Versed. We'll see. He didn't complain much of the pain during the procedure last time, but he talked of it hurting a lot days later, so he is now afraid to have it changed again, (I haven't mentioned changing it, he brings these things up on his own). The procedure takes literally, maybe 5 minutes, but the Versed works for a couple hours. He wasn't in pain after the procedure and was joking and laughing with the staff as soon as he was off the table. It's a tough decision.
I know X is fortunate and we have so much more to be thankful for than to complain about. I truly know that deep in my heart. Yet, I still struggle seeing him affected (effected? I get those mixed up all the time) by decisions we made in August of 2011 and it's heartbreaking as X's mother to see him suffer. I am just trusting that God is with X, always, and that these effects will disappear, and that He knows how all of this will play out, and that He is not condemning me for the decision of the ng tube and He will be present during the next change of the button.
I hope this doesn't sound all "doom and gloom", because that isn't how it is over here. December was definitely a harder month for me, for whatever reason, but we are definitely celebrating the victories with X's eating and yesterday's absence of any nausea, as well as X's growth and weight gain. I wanted this blog to be a place to record our life with the tube, and some moments aren't all that great, but we have more moments of joy than of sadness.
Did I mention X was nausea-free yesterday?! ;)
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