Today is the day I have been so looking forward to for weeks, but it is also the day of an appointment I think I have been dreading more than I knew. First, our whole little family heads a few hours into the mountains for Addie's week of junior high youth camp with Deer Flat Church. Let me insert here how much we love our Deer Flat family!!! Addie will be staying on site this week, while Grouchy, Ainslee, Garrett and I have the HUGE privilege of using a friend's cabin twenty minutes from camp. The cabin is in a quaint town that is small enough that we feel safe and cozy but large enough to have gas, groceries and even a single-screen movie theatre and a few mom and pop restaurants, oh, and a Subway Restaurant too!! Our friends bought the cabin in poor shape and spent over a year making it into the perfect retreat. They thought of everything, right down to heated mattress covers!!! I usually don't feel at home out of my own bed, but when I am there, I feel 100% comfortable and at-home. Grouchy will drive up pulling the church recreation trailer loaded with.....well, not sure what a junior high youth director packs to camp, but I bet it will be interesting!!! SO Addie will have camp week with us only dropping in if the youth director needs help with the activities, kitchen duty, etc, leaving Addie to have camp without real PARENTS around! The rest of us are looking forward to hanging out at an amazing hot springs with five pools and a white sandy beach, playing on the beach at the lake, some hiking, maybe a movie, and just enjoying one another before Grouchy has to go out of town again for work later this week. So Grouchy and Addie head to camp this afternoon, and Ainslee, Garrett and I head up after.....
Garrett's surgery appointment is at 2:45 today. Prayers, please!
At this first appointment, we will be discussing options for Garrett to have a cecostomy or an ACE procedure done. (You can click on either "cecostomy" or "ACE" in the previous sentence to see links with information.) Along with that comes the big question of whether to put a feeding tube back into Garrett. He had a Bard button, allowing food to be poured directly into his stomach, when he was one. He had it for about a year, then through therapy was able to learn to eat by mouth. Now that Garrett has gotten taller but lost five pounds in the past six months, his G.I. specialist and his Mito doctor and nurse are talking feeding tubes again. A nasogastric, or NG tube has been mentioned, but that means a tube into his nose, down into his little tummy, and on sensory boy, I am thinking that constant irritation would not fly. Plus, it is for short term, and we are not looking at quite that short of a time. It isn't like Garrett has been ill and lost lots of weight and is now needing a boost. It appears to be more chronic. Also, for the cecostomy or ACE to work, Garrett's stool must remain soft, and this means making certain he gets enough Miralax, and that means drinking juice or beverage with Miralax mixed in, but also taking in enough additional liquids to have his stool fall through his faulty G.I. system. He has now been on daily laxative along with his usual Miralax for a couple of weeks, and he still isn't having a bowel movement but once every few days, if that. We thought the daily laxative instead of the "as needed" if he hadn't had a BM in a couple of days might help. Nope. We will dose more laxatives today to try to get his gut to move. I am not having a good feeling about the feeding tube....feel like we are going backwards to add that. However, he needs nutrition. In my last post I mentioned we had weaned him off of Risperidol, a pretty serious med for a little person, and then his behavior followed down, down..... And the G.I. specialist said that the Risperidol could have been the only thing causing him to have an appetite. Well, I think she was right, but after a week back on Risperidol, his appetite improved for a couple of days in big ways, but now has leveled off again where the volume of food he is eating is still not enough. However, his behavior and tics are WAY improved, praise, God!!! Guess he truly needed that med, but there was no way to tell unless we tried his life without it. We have added all sorts of creative increase in calories. If I ate like Garrett, I would get really fatter, REALLY fast!!!! But I would certainly enjoy the eating!! Extra butter, sweetened condensed milk on almost everything, lots of peanut butter......fun!!! But for Garrett it seems to be a chore to choke down more food.
So today's appointment will be a discussion, I believe, of how and when to help with a button to give him internal, daily enemas, and whether or not to try a g-button for additional nutrition and liquid intake. In Mito-speak, that's a c-button or c-tube and a g-button.
I know what Mito does and how it can behave, but this is my son. He is really improving as he is learning more and becoming more in-touch and compatible with the world. I am so proud of his progress. We have true RELATIONSHIP with him now, and we love every moment of that connection. He has a much better grasp of proper behavior. He still has tons of challenges in that department, but the improvement is great. Shoot, I am choosing to take him on a three hour drive into the mountains and stay away from home a few nights as a FAMILY, and that alone speaks volumes to his improvements. Although deep down, God has worked in EACH PERSON in our family to bring us to this wonderful day of trying this trip and getting to boast of Garrett's improvements. And I am sad going into this appointment as it means medical intervention of a sort I hoped we wouldn't see. Or not yet, at least. I know he takes a load of supplements, but that's noninvasive, and cutting on his tummy and having buttons and tubes and all seems, well, like regression. On the bright side, we will do whatever he needs to help him. If a button or tube or two makes him healthier, less self-conscious about his bathroom issues, more comfortable, and stronger, I am all for it.
Thanks for riding the emotional roller coaster with me. We will all be fine, and our prayers will guide us and the doctors. No doubts there!!!
Godspeed,
CL
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