So...I have been trying to get through this post for like two weeks and it's been a struggle of time and mental energy. Where did I leave off? We had my birthday and a lovely day on Labor Day, and then it was back to the grind with a whole lot of unknowns for the week. School was starting, but Jacob didn't even really have his schedule and Carter was still not doing well. I guess I'll share a bit of a photo catch-up before getting into the long story of the week. On the last day of break (for Carter), I was working from home and he was apparently trying (but failing) to have his stuffed animals crash my work calls. At one point I looked in the monitor reflection and saw Figment with this funny head tilt, like he was trying to photobomb my camera with a fierce pose (it reminds me of a posing Miss Piggy, actually!). It made me laugh!
Remember when I was talking about Jacob's room redo? That Tuesday night was when we did the bulk of the rearranging, and when we moved his dresser (which has been in the same spot since he got it, probably close to 10 years ago), we saw this:
Yeah, that deodorant was miraculously stuck to the wall. I'm still not entirely sure how, but I think it was a combination of getting stuck between the dresser, the wall, and the faceplate, and the deodorant somehow melting just enough to leak out of the cap and adhere it to the wall. It came off easily, but it stayed there until we grabbed it. I couldn't stop laughing and I think it's pretty much the perfect metaphor for Jacob's room mess.
Outside, my plants are fading but still doing their thing. The colors of the fading hydrangeas are lovely in a different way.
Carter's first day of school was Wednesday. We did take his first day picture, but he ended up not actually going that day. He'd been struggling so much with nausea and urgency, and it just seemed impossible to go that day. He tried, he really did. The nausea just didn't want to pass. He finally started to feel a little better around mid-morning but obviously it would have felt weird to go in then, and of course the urgency still would have been an issue.
Jacob started the year okay, other than his schedule being a little screwed up, but then one of his teammates came to school sick and that started the anxiety cycle all over again. Then he got sick--although his was more of the stomach variety than the respiratory thing his teammate had--and he missed the last three days of school last week as a result. It could be a virus or maybe he got glutened, but I'm starting to think some of the digestive unrest he's had lately could be his anxiety meds doing the same thing to him that mine did to me. If it goes on much longer, we'll figure out how to get him on the meds I took. Anyway, he's back on the idea of needing to switch schools. I think the repeated tendency of his classmates and teammates bringing their sicknesses to school just got to him again and is sort of the straw that broke the camel's back on top of all the other issues he's had there. There are three leading possibilities this time, but we're not sure any is particularly feasible. We're likely going to get a lot of pushback from Section V for him to play basketball, at the very least. All three schools seem happy to have him, though. It's become very clear how many good reasons there are for him to switch, and I hope Section V can understand that we're just trying to do what's best for our kid. Could be an interesting week ahead. More soon on that, I'm sure.
He had his first game the next morning. It was at a park in the city, and it was cold and drizzly when we got there. Not exactly the best weather for a baseball game, but I guess it hadn't rained hard enough to cancel. The coach wanted them there early to practice a bit, and Craig had to work the NLL draft, so Carter and I were off bright and early. This is how I spent most of the morning:
It was chilly! Luckily the rain stopped pretty quickly, but it was cold and damp. And then the other team didn't show up. Nor did the umpires. Apparently the other baseball organization never got a schedule out to their teams, so they didn't even know they had a game. Ugh. They ended up doing some additional practicing, which would have been better had it not been so chilly. I'm not gonna lie, it was a relief to be done, even though it was starting to brighten and warm up by then. It turned into a pretty nice day, in fact.
The rest of the weekend was pretty quiet. I had a nice mix of productivity and relaxing. And we finished it off with an extremely stressful and somewhat depressing Bills game where they were down the whole game. I got so annoyed that I started catching up on some work (work is still crazy), and Carter left the game on but muted once he went to bed. Every time I looked over it seemed like the Bills had gotten the ball back, and slowly but surely they made a comeback. But rather than watching, I just kept working away because, well, you know...gotta keep the luck going somehow, and typically they do better when I don't watch. They were down a demoralizing 15 points with about four minutes to go. But then they got a couple touchdowns in quick succession, yet a missed two-point conversion (as well as another earlier in the game) left them a couple points short. But miraculously, they got the ball back one last time, marched down the field, and got a last-second field goal to win. It was CRAZY. And historic, as they were the first team ever to make that kind of a comeback so late in the game. I was literally in disbelief watching that field goal go through because it had seemed like a lost cause not that long before. But it was a late Sunday night game and Carter and I had an early appointment, so it was off to bed as soon as my work was done and blood pressure was back to normal!
The zinnias that nearly died when we were in Florida made a great comeback.
Carter's first day of school was Wednesday. We did take his first day picture, but he ended up not actually going that day. He'd been struggling so much with nausea and urgency, and it just seemed impossible to go that day. He tried, he really did. The nausea just didn't want to pass. He finally started to feel a little better around mid-morning but obviously it would have felt weird to go in then, and of course the urgency still would have been an issue.
I felt so bad for him. We thought we had figured out the nausea by eating crackers first thing, but there were days where it still snuck through. If he didn't actually get sick, it lasted a while. But if he did get sick, it was super painful. He also had a lot of pain when it came out the other end, along with quite a bit of blood. It was just awful to know how bad he felt and not know how else to help him or how to get him to be okay at school.
Luckily we had a Zoom appointment with his doctor that afternoon. I had been messaging them nearly daily as his symptoms got worse, especially when the nausea became daily and when there was some blood in the little vomit he'd actually get up. We knew he couldn't go to school unless he got more help. He had his first infusion coming up Monday, but I really didn't want him to miss all three of the days that first week. The doctors decided that it was likely that the one anti-inflammatory antibiotic they'd put him on was likely causing the nausea, so they gave him the OK to stop that. It seemed like the budesonide he had been taking wasn't doing enough, so they decided to move forward with prednisone. Usually that kind of a steroid is a bit of a last resort, but in his case I think it seemed like a necessary bridge to his infusion. They also prescribed Zofran to help with the nausea and omeprazole to additionally reduce the stomach acid. I headed to Wegmans when I got the confirmation on two of those being filled, but for some reason the prednisone was coming back as delayed. When I got there I asked why, and apparently the doctor forgot to sign the paperwork! I relayed to the girl waiting on me that the prednisone was the one he really needed to be able to get to school, and she said, "Let me see what we can do." They ended up calling the after hours on-call number, and miraculously (after a half hour and a cranky Jacob, who was annoyed to have to wait), they were able to fill it. Thank goodness.
We started the omeprazole that night and I set up the other two for the morning. I would have done the prednisone right then and there, but I didn't want it to give him trouble sleeping so we waited. He took his meds first thing in the morning with the crackers, and while he did have a little bit of nausea and some bathroom trips, he managed to get himself together and made it to school only about five minutes late. I'll take it! And that prednisone worked almost immediately because he didn't have to go to the bathroom at school and has been doing amazingly ever since. It's too bad he can't stay on it forever, you know? But hopefully we'll get him to remission another way.
Jacob's first day of school was Thursday, which meant both kids were able to head out that day.
Jacob started the year okay, other than his schedule being a little screwed up, but then one of his teammates came to school sick and that started the anxiety cycle all over again. Then he got sick--although his was more of the stomach variety than the respiratory thing his teammate had--and he missed the last three days of school last week as a result. It could be a virus or maybe he got glutened, but I'm starting to think some of the digestive unrest he's had lately could be his anxiety meds doing the same thing to him that mine did to me. If it goes on much longer, we'll figure out how to get him on the meds I took. Anyway, he's back on the idea of needing to switch schools. I think the repeated tendency of his classmates and teammates bringing their sicknesses to school just got to him again and is sort of the straw that broke the camel's back on top of all the other issues he's had there. There are three leading possibilities this time, but we're not sure any is particularly feasible. We're likely going to get a lot of pushback from Section V for him to play basketball, at the very least. All three schools seem happy to have him, though. It's become very clear how many good reasons there are for him to switch, and I hope Section V can understand that we're just trying to do what's best for our kid. Could be an interesting week ahead. More soon on that, I'm sure.
Anyway, this was the view from my car on the way home that first day. I wanted to take it as a good sign, but a while back I had the realization that the rainbow was maybe more a sign of God being with us through the hard stuff, rather than a promise that everything is going to be okay. Still, it was gorgeous.
Carter did well again on Friday, which was a double relief because his baseball season was starting and bathrooms aren't always easy to come by at the field. But he was feeling good and having no urgency, so it was a big load off our minds for him to be able to go to practice. I forgot how practice gets impacted this time of year by the early sunsets, but boy, was it pretty.
It was chilly! Luckily the rain stopped pretty quickly, but it was cold and damp. And then the other team didn't show up. Nor did the umpires. Apparently the other baseball organization never got a schedule out to their teams, so they didn't even know they had a game. Ugh. They ended up doing some additional practicing, which would have been better had it not been so chilly. I'm not gonna lie, it was a relief to be done, even though it was starting to brighten and warm up by then. It turned into a pretty nice day, in fact.
The rest of the weekend was pretty quiet. I had a nice mix of productivity and relaxing. And we finished it off with an extremely stressful and somewhat depressing Bills game where they were down the whole game. I got so annoyed that I started catching up on some work (work is still crazy), and Carter left the game on but muted once he went to bed. Every time I looked over it seemed like the Bills had gotten the ball back, and slowly but surely they made a comeback. But rather than watching, I just kept working away because, well, you know...gotta keep the luck going somehow, and typically they do better when I don't watch. They were down a demoralizing 15 points with about four minutes to go. But then they got a couple touchdowns in quick succession, yet a missed two-point conversion (as well as another earlier in the game) left them a couple points short. But miraculously, they got the ball back one last time, marched down the field, and got a last-second field goal to win. It was CRAZY. And historic, as they were the first team ever to make that kind of a comeback so late in the game. I was literally in disbelief watching that field goal go through because it had seemed like a lost cause not that long before. But it was a late Sunday night game and Carter and I had an early appointment, so it was off to bed as soon as my work was done and blood pressure was back to normal!
Monday morning was Carter's first infusion. We stopped for a good breakfast en route, and then made our way to the hospital. Sadly we weren't in the much more kid-friendly children's hospital tower, but our waiting room did have a lovely view. I liked this pic of one of the window decals superimposed on the view of the Rush Rhees Library dome in the distance.
It took a little extra time for us to actually get into the infusion room, so we had plenty of time to see the sights in the waiting room. This pediatric treatment center does a lot of different procedures ranging from chemo and lumbar punctures to injections and testing. There was a wide variety of kids there. Some looked completely normal and healthy. One kid came in with a fully masked family and was wearing a "Fight like a lion" shirt, so I'm assuming he might have cancer. One little girl looked like she either had cerebral palsy or some sort of developmental issue. Another girl, maybe a teenager, had a clear chromosomal disorder that impacted her face shape. She was in a wheelchair but was saying hello to everyone. I didn't hear her talk much besides that, but her mom talked to her like she was just a normal teen. Once we were inside we heard a couple kids protesting loudly as they were getting their treatments. The nurse indicated they see a little of everything there, and some kids struggle more than others with things like IVs. The whole experience was sobering, of course. I'm sitting there feeling a little sorry for ourselves (mostly Carter, but wondering how I managed to get two kids with crappy autoimmune GI disorders), and then I see all those kids with profound challenges. I could really only be grateful in that moment that Carter was already feeling better and that his illness seems relatively treatable in comparison.
Carter's treatment involves an IV infusion of monoclonal antibodies, through a medicine called infliximab. He'll get another one in two weeks and another a month after that, and the hope is to space them eight weeks if we can after that. But they'll have to check his levels after the third loading dose to see if he is showing the medicine in his system at appropriate levels and also to ensure his body isn't making antibodies against it. They'll also recheck a lot of his inflammation levels along the way. This particular infusion was lengthy, mostly because they need to start slow to check for any sort of reaction. Thankfully, his went smoothly.
He was a trooper with that IV and the boredom. He sat on his phone, although we could have watched TV or something. I did do a bunch of work while I was there, as well. But everything just seemed to take forever this time, and by the time we were done, it was about 2:30 and we were starving! We could have probably gotten snacks as they did offer some up, but Carter was holding out for lunch from Popeye's! On our way out, we had to get a selfie with the man of the hour! It was fun seeing all the nurses in their Bills gear after the big win, and seeing Josh made me smile. He also helped Carter to a big fantasy football win over me (which was perfectly acceptable as long as the Bills won)!
So, Carter is feeling much more normal these days, and you could see it immediately. His mood and energy changed so quickly. It made me sad to realize just how blah he had been in comparison. His system seems to be completely back to normal, which is sort of shocking after how bad it got. He also is slowly working some dairy back in (no pizza yet, but some chocolate and a small bit of cheese), and so far so good. He's also gained somewhere in the realm of 5-7 pounds in less than two weeks. He'd lost a bit during this last flare, but is eating like a horse now and trying to pack it on while he can. I'm sure a lot of the recovery is the prednisone, and he'll be slowly weaning off it for the next few weeks. From four pills down to three this week, two next week, and one the week after that. So I guess we'll see between the next two infusions if the infusions are really working on their own. I keep watching posts from the Facebook page I joined, and it's sobering to see all the struggles other families have. Terrible flares, failed medicines, awful side effects...it scares me a bit. But I'm trying not to go there, because I'm sure for every terrible story there is another one that's had minimal issues. Given how quickly the prednisone worked, I'm hopeful that means that it could help again in the future if we need it, and maybe his disease isn't as severe, or we at least caught it early-ish. Although it looked pretty bad for a bit, he was never hospitalized, so that's a positive. It could be a long, challenging road, but we've hit a reprieve for now.
So...two weeks into the school year, we have one kid who's thankful to be going to school, and another who is not going to school at all...for now. Not exactly how I pictured it (and if anything I almost figured the roles would be reversed), but we're just taking it one day at a time right now. That's probably all we can handle, actually. Happy Fall!?
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