I’ve had a few of you ask about the details of Sawyer’s Remicade infusion treatments and his diagnoses, so I thought I’d share a little more info. On July 2, during a visit to the ER due to severe pain, Sawyer was diagnosed with Crohn’s disease, a life-long condition that affects the entire gastrointestinal tract. Sawyer stayed at Dell Children’s Hospital for six days while a variety of specialists (gastroenterologist, infectious disease, hospital pediatrician, etc.) worked on his case. During his hospital stay, Sawyer endured many tests, including a colonoscopy, endoscopy, upper and lower GI, abdominal CT scans, X-rays, and much blood work. It was determined that Sawyer had such a severe case of Crohn’s that the specialists felt he would need to jump to the big guns of Crohn’s treatment (Remicade medicine) in order to control things. The other drugs would take too long to work and most likely wouldn’t be powerful enough to effectively control Sawyer’s Crohn’s disease. Since my hubby/Sawyer’s daddy takes Remicade to control his ulcerative colitis (because all other meds failed), it was likely that this medicine would be effective for Sawyer as well.
On July 13, after proving that Sawyer and none of our family members have active TB, Sawyer was able to receive his infusion treatment in a special infusion room at his gastroenterologist’s office, which is adjacent to Dell Children’s Hospital. (Patients who receive Remicade and have TB are not able to fight it off, resulting in death most of the time, which is why we had to prove that no one has TB in our family.) I took Sawyer for his first infusion treatment and shortly after our arrival, we were taken to the infusion room where we visited with the infusion nurse. She explained everything to Sawyer, got his IV started, then got him set up in a comfy reclining chair. The best thing about this room and procedure is that there’s an X-box video gaming system that Sawyer LOVED. Since we don’t have video games/TV in our home, Sawyer was thrilled that he would get to play video games while he got his infusion, which was an excellent way to pass the time for him. It only took about 3 hours total for the infusion (about 4 hours for the visit, set-up, discharge, etc.), so that was a pleasant surprise since we had prepared for 5-8 hours for his first infusion. The first infusion must be done more slowly than subsequent infusions because they have to watch closely for adverse reactions. Sawyer displayed no signs of adverse reactions, so the nurse was able to bump up the speed of the infusion more quickly than we expected.
Sawyer is such a trooper. The infusion nurse commented that he was an excellent patient. He’s seriously so very brave, such a warrior. Nothing bothers him and nothing is going to steal his joy. He finds delight in the little things that most of us take for granted. He doesn’t flinch or squawk about the IV or the meds or the procedure or his condition. The nurse pulled me aside to let me know what an awesome kid Sawyer is, after being around him for only an hour or so. I absolutely agreed.
We’ve really missed the “real” Sawyer who has slowly disappeared over the last few months. None of us, including Sawyer, realized how sick he really was. The severity of Sawyer’s illness was not revealed until the day I took him to the ER. We had a couple of doctor’s visits prior to the ER visit (a well check and a visit specifically for his pain), but no one realized just how sick and how serious things were. In hindsight, we realize that the Crohn’s Disease had caused Sawyer to be extremely lethargic and just not himself for the past few months. I recently commented, before Sawyer’s hospitalization, that Sawyer seemed depressed because he had stopped joking, laughing, being silly, and being a source of constant amusement in our home. He was just so sick internally that he could barely function, but none of us realized what was going on. While none of us want Sawyer to have Crohn’s, the diagnosis explains everything about Sawyer’s recent symptoms and behaviors, right down to personality changes.
We also wonder if Sawyer has had Crohn’s most of his life, but just hadn’t had a flare-up of this magnitude. As an infant, Sawyer was diagnosed with allergic colitis. He had severe inflammation in his colon, and he had bloody diarrhea caused by food allergies. I breastfed Sawyer until he was 20 months old, but I had to completely avoid any and all forms of the multiple foods/ingredients he was allergic to. Corn/corn products was a huge allergen for Sawyer, and I was shocked to find out that there were over 100 forms of corn/ingredients derived from corn that didn’t even have the word “corn” in them. Things like dextrose and maltodextrin, both derived from corn. Even things like my licking an envelope seal (which has corn in it) would cause Sawyer to have bloody diarrhea as an infant after I breastfed him. Yes, it was that severe.
Sawyer has suffered from malabsorption his entire life, he’s suffered from severe food allergies his entire life, he was failure to thrive as an infant, he wasn’t even on the growth charts until age 18 months, then he remained in the less than 5th percentile on the growth charts up until this year, when he jumped up to the 25th percentile for his height, which we rejoiced in. The symptoms of Crohn’s match up to most of what Sawyer has experienced for his 12 years of life, so it’s possible that Sawyer’s had Crohn’s for a lot longer than we realize. This recent flare up was so severe that Sawyer just couldn’t function, which is why I took him to the ER. This diagnosis seems to explain a lot about Sawyer’s history. We pray Sawyer’s future will soar now that we have a diagnosis and treatment plan. Although Sawyer will always have Crohn’s, unless Jehovah Rapha heals him, there is treatment to control the severity of the disease.
Sawyer will get another IV infusion of Remicade in two weeks, then he will move to every four weeks. The goal is to get to every eight weeks, or further between intervals, but we won’t know the exact schedule and requirements until we see how Sawyer’s body reacts to the Remicade. We will continue to pray for supernatural healing, along with the Remicade, with hope and belief that one day Sawyer will be in remission.
We want to thank you all for praying for Sawyer. Your prayers are genuinely felt and greatly appreciated. We also want to thank everyone who stepped in to serve meals to our family during Sawyer’s hospital stay. The body of Christ is incredible. Without even asking for an ounce of help, people show up at our house to bless our socks off. Seriously, we cannot thank you all enough for being His hands and feet through prayers and meals and helps in a variety of ways. So grateful for each of you. Thank you is not enough.