I won’t lie. It was a very emotionally exhausting day today. I’m sure most of you have been through a situation when you were told one thing but then experienced something totally different. That was our day. We went into this surgery with the understanding the Chait tube would sit flush against Ryan’s belly and not stick out which isn’t at all what we are experiencing. The surgeon said this morning it only comes in two sizes – very small and big. Well the very small is for little kids so Ryan got the big one. When we voiced our concerns, the surgeon said hopefully when the stitches dissolve that are currently holding Ryan’s colon to his abdominal wall, the tube will fit a little tighter against his belly. We just worry about it getting caught and pulled out. Then the surgeon initially told us we would only have to do this procedure/flush once a day which should take about 20-40 minutes from beginning to end. Well that didn’t happen either because now he said we have to do it twice a day for two weeks. He was in to do the flush with several other doctors this morning and said we should have results in 2-4 hours since this was the first time. After 1 hr and 45 minutes, Ryan finally stooled and it went everywhere. Blow out is an understatement. So we thought that was the end of it but no, two hours later, we had a lake of stool all over the bed. It took five of us to clean him up, change the bedding and get him settled again. Travis and I were less than pleased and were on the edge of big, ugly tears mixed with frustration and anger. We even said we wished we hadn’t done this surgery and could go back in time and undo what we have done. After having a long talk with Ryan’s nurse, who was absolutely fabulous, she called the surgeon and came back in to tell us what he said. He apologized for not telling us how this initial flush would go because it’s the first clean out he has had. Think colonoscopy prep. Apparently it will take some time for Ryan’s colon to figure out exactly what we want it to do and eventually this should end up being a quick procedure that does not linger for four hours like it did today. My biggest frustration today was feeling like we were lied to. Like we were sold a beautiful car that turned into a lemon the minute we drove off the lot. Like leaving for a beautiful vacation to Hawaii but somehow ending up in an Iowa cornfield. In my mind I know this is a necessary intervention to compensate for the inability of Ryan’s colon to move things. But getting from point A to point B was not supposed to look like it does right now. It was supposed to be a slight incline with a few pot holes along the way, not a treacherous climb. These next few days, maybe the entire next two weeks, are going to be tough as we deal with this procedure twice a day, and the worst part is watching Ryan deal with the cramping from his rebellious colon that doesn’t like what we are doing to it.
None of us ever want to see our children suffer or deal with pain. And to watch our little one who does not understand what is happening to his body is a shearing pain ripping through our hearts. We know we did this for quality of life so he doesn’t have to face the ups and downs of constipation and painful stooling. But getting from here to there is a longer, hotter, more exhausting road than we anticipated. The emotional drain has rendered us crabby and critical of each other. As most married people do, we have taken our frustrations out on each other today. Thankfully we’ve been through enough stress in our days to know this will pass and more peaceful moments are coming. Thank God for grace and forgiveness, both essential in a good partnership. I’m grateful for the next two and a half weeks before school starts so we can attempt to get Ryan’s body into a more acceptable routine with this. Sometimes it’s hard to focus on the long term goal and beauty that lies ahead instead of looking at the hard directly in front of us today.
We know in our hearts we only did this for Ryan’s quality of life. To reduce pain and discomfort in a weakening body. But to get there, we have to get through the next couple of weeks which will be challenging and emotional. I am certain the results will be worth the temporary pain. Like so many goals, we have to get through the hardship to enjoy the satisfaction of our hard work. There is no giving up in life or with doing everything we can to make Ryan comfortable and content. And eventually this procedure will do just that. We simply went in to this with a different idea of how things would play out. It’s a new normal, but right now, not a pleasant one by any stretch.
Ryan is doing OK otherwise. He is completely exhausted and has slept the entire day. He hasn’t eaten anything by mouth nor has he even attempted to walk. He can barely keep his eyes open and has been lying on the couch since we got home around 2:45 this afternoon. I’m thankful for the strong pain medication we can give him, and he does not seem to be in any pain unless he is changing positions. Best of all, we have avoided his bowels shutting down which is what we have been praying for so hopefully that will not shut down in the coming days. Thank you for your prayers and support. We are blessed with the most amazing friends and family and don’t take any of you for granted. Your prayers and encouragement are precious to our hearts and healing to our souls.