I always debate when updating Clayton’s journey for you all just how much of our day to share. Typically, we celebrate the good moments on here. Frankly, when you have a kid with complex medical needs, you learn to really savor the positive moments because they really are few and far between. That said, I always think about the parents who will be scouring Google, Facebook, all corners of the internet just like we did because they were just handed the same devastating diagnosis we were nine months ago. The positives are great, but perspective into a typical day is really necessary. A typical day is only typical in that they are entirely atypical. Our weekend included a big positive moment in that we finally got to do what most families take for granted and go to a park together for a hour, but what we haven’t told you all are the curveballs we navigate that every day throws at us.
For the last month or so, Clay has had some serious GI issues, constantly throwing up anything in his stomach. His developmental issues have left him exclusively tube fed through a g tube into his stomach. Throwing up about once a day has been our reality, but all the GI tests come back normal. We’ve learned to deal with it (my basement “office” for the last year next to the washer and dryer has been helpful), although it isn’t ideal. Things worsened to the point a different tube was placed through his nose straight to his intestines to bypass his stomach and keep his meds and food in him. On Saturday morning, as he was finishing his overnight feed, his pump gave us the no flow warning. We troubleshot the pump, but still had the warning. I tried to flush the tube, but it was clogged. We spent the next three hours in the ER where they worked their magic and got the tube moving again. One crisis averted. He’s still throwing up spit and stomach acid, but he’s fed and medicated. We are working on getting an appointment with the GI team to try to figure out how to stop the throwing up.
Sunday was a fairly good day, but then Monday happened. Due to his history of infections in his central line, he has an antibiotic lock placed in it every day. After 8 to 12 hours, it needs to be removed and the line flushed again. Today, when we tried to take it out, there was no blood return on his line. We were headed to clinic this morning, so I called his nurse coordinator and told her the issue. With some hospital grade tricks, we got that line moving again too. Another crisis averted.
Twice a week, Clay goes to the clinic to get blood draws to check on his liver. For the most part his liver numbers have been fantastic. Today was the first time we were told something was off and they needed to do an ultrasound of his liver. That will happen in the next day or two, but some of his blood counts are low and one of his liver numbers are elevated. A few other numbers are in normal range, but the edges of normal when he is usually perfect in the middle, so it is cause for concern. It could be a few different things and we will know after the ultrasound.
I know this isn’t the cheerful positive post everyone is used to seeing, but our days are filled with so many surprises, both good and bad, and stories like this always have ups and downs. It’s not easy, but we know as long as this guy fights along, it’s our job to fight just as hard and advocate for him. We’ve been incredibly lucky to be able to share his journey with you all, even if it is from afar for most of you. All of your kind words, support, and generosity has made things a little bit easier as we go forward.