Well, it’s Thursday and we are now in our 4th day here at the hospital. Cannon is doing somewhat better than the last time I updated ya’ll. He finished his first gallon of medicine and began the second on Wednesday. Finished the second and now the third is complete here on Thursday. He had an x-ray before completing the 1st because he began swelling significantly and there was some concern that the “elevated air fluid levels” could be increasing. That film showed no change in both the burden in his colon and the air fluid levels. Not better…..not worse. That swelling has been incrementally getting better. The other x-ray was done after the 3rd gallon was complete and still showed some dilation. So, we are beginning a 4th gallon as I type. 🙁
When the Surgical Attending came by to consult on Tuesday, she recommended that he be tested for Cystic Fibrosis. At first, I was baffled. I thought this was only a condition that affects the lungs. So, I contacted a family in our church who have a child with CF for more info in somewhat layman’s terms. The dad is very thorough and sent me this response and explanation.
“What CF does is create thick sticky mucus that smothers the lungs and/or pancreas. In patients that suffer from the pancreatic effects, the enzymes that the pancreas produces cannot reach the intestines to break down the food and extract nutrients from it. Hallmarks of this condition are poor weight gain despite a healthy appetite and frequent large, bulky stools. A telltale sign of a person with CF is extremely salty sweat. GI problems are a major contributor in an unhealthy CF patient.
The CF test for someone Cannon’s age is non-invasive, but given his special considerations it may be a bit more difficult for him than for others. My daughter had a sweat chloride test done when she was 3 to rule out the possibility of her having CF. Essentially what they do is apply a skin irritant to the arms designed to propagate sweating. Then, they wrap the arms in gauze, held in place by a cuff that applies ultra-low electrical current. The arms are wrapped in cellophane and allowed to sweat. The sweat in the gauze is analyzed for chloride content and a blood test may be done if the sweat test yields questionable results. Be warned, my daughter had a difficult time due to the discomfort caused by the skin irritant. The arm wraps will need to be kept in place for about a 1/2 hour if my memory serves me correctly.”
We decided to go ahead with the test. The docs aren’t terribly concerned that this could be a positive result for Cannon but there are so many mutations of CF, that it’s better to test for it and be sure. Rule it out. He will have this test done tomorrow morning and we should have the results in 24 hours.
One cool thing that has happened this visit is that Cannon was enrolled in the Beads of Courage program. This program is all about “providing innovative, arts-in-medicine programs to help children and families with serious illness record, tell, and own their stories of courage.” So, Cannon was given a string with beads that spell out his name and an official Beads of Courage bead. Then, the Child Life Specialist who presented the program to me told me that the next step was that I had some homework. She knows me well and knew that I have detailed notes dating back to when this all started. She asked me to go through them and right down how many pokes, tests, procedures, surgeries, hospital stays, etc he had had. And then record them in his Beads of Courage journal. Once I had that ready for her, she would bring me all the beads and I could start stringing. She warned me the process could be emotional and she was right. Reading through 2 years and some change worth of struggle, pain, and just plain blah was difficult to say the least. I knew these years had been rough but when you read it like a book, it can be overwhelming. But when I was done recording and stringing the beads…..I had a weird sense of pride. Not because I am proud that he has these issues. NOT AT ALL! I was proud of him for all he has been able to endure. Proud of his resiliency. And proud that we now had something to validate ALL of those tough times. They are not forgotten. He should be able to wear them like a badge of honor. And now he can. Each color or shape of a bead symbolizes something. For example, yellow are for days in the hospital, light green for tests, tortoise for procedures, blue for clinic visits, and black for I.V. starts and blood draws. Then there are other speciality beads for things like special accomplishments or acts of courage. I was dumbfounded when it was complete. I couldn’t believe how many beads had been accumulated. Keep in mind…..he is FIVE….barely. And he has only had this issue a little over 2 years. AND this is not even his primary diagnosis! Autism takes up the bulk of our life. Anyways….please check out this org’s website and donate or get involved, if possible. I am so impressed with this program and thankful that it came into our lives. We plan to display his beads in Cannon’s new therapy room (coming soon!) so he will never forget how awesome he is and how strong he is!
Thank you so much for bombarding us with prayers, support, and love. It keeps us buoyant on weeks like this! WE LOVE YOU ALL! Our goal right now is to stay up and positive and remember that God is in control and He has a plan for Cannon. The easy way out would be to fall to pieces and ask why over and over. I am not supposed to understand it. So, I need to keep crying out to Him when I need strength and continue to put one foot in front of the other. And TELL that foot to keep moving. God’s got this! 🙂
“Trust in the Lord with all your heart. Lean not on your own understanding. In all your ways acknowledge Him and he will direct your path.” Proverbs 3:5-6