Well, it’s complicated. :-) We’ve been meeting with a variety of specialists today regarding Sawyer’s case. Thanks for your patience in waiting for an update, and thanks for praying regardless of hearing from me or not. So grateful for all of you!!!
The upper GI test confirmed Crohn’s disease has attacked Sawyer’s upper gut, but there aren’t any strictures that require surgery, praise God. Sawyer has severe inflammation in his stomach and small intestine, which explains why his stomach always hurts. Since Sawyer was an infant, he’s always had stomach pain. He was diagnosed with allergic colitis as an infant, and he’s just always struggled with stomach pain. Sawyer has severe food allergies, so we always assumed his gut was just ultra sensitive. It might just be that Sawyer’s been battling Crohn’s for longer than we realize.
We still don’t know how much of Sawyer’s lower intestinal tract is affected by Crohn’s, but there’s not a good way to determine that since the colonoscopy revealed such severe colitis that it was too dangerous to explore further with the scope. Sawyer’s gastroenterologist visited with us today regarding this, and basically, Sawyer’s Crohn’s case is so severe (as verified in just the sigmoid colon) that it warrants jumping straight to Remicade as the solution. Remicade works quickly (when it works), and Sawyer is in desperate need of quick healing. He’s a very, very sick guy.
Sawyer has ZERO appetite. He doesn’t want to eat anything or drink anything, which goes with Crohn’s, particularly during a flare-up. In the 4 days Sawyer’s been in the hospital, he’s probably only eaten a total of about 250 calories. He’s only drunk a total of about 20 ounces. This is obviously not adequate nutrition nor fluid intake, but the hospital has kept Sawyer hydrated with IV fluids. We’ve struggled with Sawyer’s decreased appetite his entire life, always having to “force” him to eat 3 meals/day, and within those 3 meals, reminding him to “take bites”. :-) We’ve learned that most Crohn’s patients have a decreased appetite and are smaller in stature, particularly if plagued by Crohn’s as a child. That definitely matches up with Sawyer.
We’re told that Sawyer’s appetite should increase after the Remicade reduces internal GI inflammation and ulcers, but we’ve run into a little snag that is delaying the start of Remicade for Sawyer.
In order to begin Remicade treatments, Sawyer must have a negative Tb (tuberculosis) test because if a person has active or even latent Tb, they are at high risk of death on Remicade. Patients with autoimmune disease are less likely to show a positive reaction to a Tb test (even if they truly have Tb), so the Tb test is administered with a control test in order to insure validity. Well, Sawyer didn’t have a reaction to the injected Tb test (which is good) , BUT he also didn’t react to the control injection, which makes the negative Tb reading invalid. The control injection is supposed to cause a reaction in everyone, so when one doesn’t react to the control, it means the Tb injection is not considered a valid test.
So, a chest X-ray was ordered to disprove Sawyer has Tb. That reading was “pristine”, according to Sawyer’s gastroenterologist, but there’s still another factor to consider. Technically, Sawyer could still have latent Tb that wouldn’t show up in the chest X-ray, so that requires a blood test, which was drawn this morning. However, the blood test can take up to a week or so to get it back, and there’s a possibility that the blood test can have a determination of “undetermined”. Ugh.
So, the new plan for Sawyer is a little different than expected. Sawyer was started on IV steroids to help reduce inflammation and calm down this severe flare-up. He will continue IV steroids through tomorrow (Friday), then he will transition to oral steroids. If Sawyer is able to have his pain controlled with oral painkillers, and if Sawyer’s blood pressure and other vitals and symptoms stay within an acceptable range, he will be discharged from the hospital Friday afternoon/evening. He will lay low at home while we await the negative Tb blood test, then Sawyer will return to the hospital after negative Tb is confirmed and he will receive his first Remicade infusion treatment. This will be done in the hospital, but shouldn’t require an overnight stay, unless there are complications.
So, that’s the update for today. Sawyer is a sick guy, but his spirit is always positive. He’s a strong warrior who doesn’t let things get him down too easily. He just says he wants to feel better, so whatever it takes to get him there, he’s in agreement. Of course children don’t understand the long-term prognosis, risks, etc., but that’s OK, we don’t want or need that stress in our lives anyway. God’s Word commands us not to worry, so He gives us many times daily to practice our obedience. Matthew 6 reminds us not to worry about tomorrow, so we obey that and simply live for today.