Carter and I are both in a sort of in-between with our GI stuff. The worst of the symptoms have eased, but things are still clearly going on. My symptoms have gotten a little worse again, although not nearly as intense. His are sporadic. His next round of testing last week showed slight improvement in a few of the areas, including the all-important hemoglobin (a few tenths of a point but better nonetheless), but the one inflammation marker specific to the intestines that was already shockingly high was even higher. I noticed that one of the other inflammation markers was extra high in the first round of bloodwork he had done, before anything consistent was happening (that was just some testing thrown in with the Celiac test), and then it came down later even though his physical symptoms got worse. That lends credence to the idea that this was some sort of infection initially and this is some sort of aftermath--perhaps the autoimmune response the doctor mentioned as a possibility. I still just find it so weird we have the same thing happening, pretty much out of the blue, at the same time.
His GI appointment was yesterday (finally), and mine is Friday. I sort of wanted to call the GI doc and ask if I should get any blood work done beforehand, just to see if mine mirrors Carter's at all, but maybe that can come after. I feel like both of our experiences should be taken into consideration because it could be either a genetic thing or that we both caught the same thing. His next step is a colonoscopy, unfortunately. I'm wondering if mine could be another SIBO test. His doctor doesn't think it could be SIBO because bleeding is rare, but that would be on the table depending on what the colonoscopy shows. As much as I'm worried about him and want to get his levels and weight up ASAP, having the appointment coming up allowed me to compartmentalize the anxiety a bit, especially since his situation hasn't gotten significantly worse, symptom-wise. There wasn't really anything else we could do until that appointment, so I appreciated the little mental break, even if I know there's still an undercurrent of nerves.
And then there's Jacob. Just when we thought things had calmed down with him, here we are again. Did I mention that we were supposed to have his anxiety med consultation a couple weeks ago and somehow the system failed us? There's some sort of issue with joining Zoom calls and seeing that the other person is there--in fact, I had it happen for an appointment of mine right after his, but managed to realize that if I went out and came back in, it might work, and it did. Well, because of that we missed his appointment and we're now waiting another month. That felt extra inconvenient this time around because it's been a rough few days of anxiety. Jacob and Craig went to Pennsylvania last weekend for a tournament. His first game was Friday night and he called me after pretty much freaking out because he was exhausted after running up and down the court a couple times. He'd been feeling a little off for a couple weeks, but honestly, it just seemed like his annual funk near the end of the school year where he's extra tired and unmotivated in the mornings and just feeling a little down about various things. It's happened the last couple years, so I figured this was the latest round. He was still working out, but he did mention being extra sweaty and a little more tired. But of course, he never wants to go to bed early and often lets his eating habits get out of whack, which of course could contribute to being out-of-sorts as well. But he was so exhausted during that game that he was convinced that his iron was low. It wasn't a bad theory. He discontinued his iron supplements that he'd been taking for a couple years after his endoscopy found that he had gastric siderosis, which is iron deposits in the stomach lining. It's usually caused by oral supplements and can be made worse by reflux meds. They seemed to think it was over-supplementation, and I did ask if we should test him before taking him off, but they seemed to think if anything that we could test after. I guess it made sense because his hemoglobin, RBC, and hematocrit were all good when he had the endoscopy done, so I don't think they suspected anything could be off. But truthfully, he hadn't been retested for iron or ferritin for a long time, so we have no idea where his levels were sitting before he stopped. We managed to get his GI provider to send in lab orders Monday morning, and results started coming in a few hours later. Shockingly, his iron was really good (almost too good). His vitamin D, however, was low. That's a little odd since he does get 1,000 IU daily. He used to take 2,000 IU but with all of his issues over the last year I began to wonder if it was too much, so when those ran out I had him take the same amount I do. Guess it wasn't too much after all. Otherwise his results weren't too notable, but there were a couple blips. His anion gap was slightly high, and his protein, albumin, and creatinine were all at the very high end of normal. His bilirubin was higher than in the past, too. All of those things can typically correlate with dehydration, but some of those things can also be a part of a kidney issue. Now, normally I would completely rule out the kidney thing (and I think the bilirubin makes the dehydration thing more likely), BUT if you recall we did have all those issues earlier in the year with the possible kidney stone, some pain, and an ultrasound. The ultrasound was fine, although one did have more fluid than the other, but it decreased significantly once he emptied his bladder and no one seemed concerned. But if you think about that and then bring in his higher blood pressure that started this mess 11 months ago and hasn't permanently gone away, I suppose that could be something. Where that would have ever come from, I have no idea. Oddly, high iron can also be a kidney thing, and while his was definitely not high, it was oddly higher without supplementation than it was two years ago. So that strikes me as a little odd. The GI provider wasn't concerned about the blood work at all, and neither was his pediatrician. But I keep wondering if this is one of those cases where all the puzzle pieces separately seem fine, but when you put them all together (which a lot of doctors don't do because they don't overthink like parents do and assume a relatively healthy young kid is fine), it looks a little different. His pediatrician said that nothing in the blood work would explain the fatigue, so he was referring us back to the cardiologist. Jacob had a clean ultrasound last summer after having some chest pain and the high blood pressure, so I'm not sure what else they might look for now, but I'm honestly a little annoyed that no one is listening to the dehydration or kidney thing. He does use a lot of hydration drinks, so I almost wonder if he's having too many of those and not enough regular water to offset the salt.
But suffice it to say that this was another wrinkle that we definitely didn't need. Jacob asked about 400 times last weekend to get his blood work done, even though I assured him I had messaged the doctor, and he was panicking because ChatGPT was telling him it could be months before he was back to normal if it was the iron. Then yesterday he was asking me about dysautonomia and POTS. My friend ended up with a horrible case of POTS after she had COVID, and he's nowhere near that. But UGH. STOP IT. We're not doctors and neither is ChatGPT. ChatGPT is helpful but not perfect. But his anxiety just won't let him quit. It's exhausting and I think it's making his symptoms even worse. At least, I know mine always feel worse when I'm constantly worrying about them.
So, here we are, lots of health issues and no real answers. I was hoping for more progress this week, but it ended up being a lot of hurry-up-and-wait. Miraculously, Craig did his blood work for the first time in ages and I was honestly bracing myself for the worst (because why not at this point?), but the only thing that seemed to be off was his cholesterol, which has been up and down in the past. There's still a few things he's dealing with--work stress, a bad knee, and some general fatigue that I think could be worsened by any of the above plus maybe the meds he's on--so he's not completely in the clear, but at least nothing concerning popped up this time around.
So, anyway, back to the weekend. After the unsuccessful game on Friday night, Craig and Jacob decided to just skip the rest of the weekend and come home. Part of it was probably because they actually had another player staying in their room and Jacob was uncomfortable being so vulnerable and miserable around someone he barely knew. It was unfortunate to lose that money and it was a pretty rough deal for Craig to drive 11 hours in about a 30 hour span, but I know Jacob was thankful to be home. It put a bit of a wrench in Carter's and my plans for our weekend, though. Carter had our eating planned out, and I had some plans for us in case his baseball game got canceled. Somehow the baseball game happened despite torrential rain in the morning, and the boys made it back just after the game started. But that meant that I had to overhaul our eating plans and readjust my expectations of the entire weekend. I think as a whole I was just exhausted by this latest development and I wasn't nearly as productive during the second half of the weekend as I wanted to be. I was tired and doing a lot of disassociating with my phone, when I should have been doing other things. The weather was also a bit demotivating because the warmth of Friday was interrupted by rain Saturday morning and cooler temps by Saturday afternoon, and then Sunday kicked off a full week of 50s (including a frost warning Tuesday morning). Not exactly what I was hoping for in late May. We'll be lucky to hit mid-60s for Memorial Day, which is pretty sad, yet that will be a vast improvement over this week. The low 50s and rain later in week are already so depressing, and we're only about halfway through it. Though, it all still pales in comparison to the insanity going on in the midwest, which has been hit by tornadoes daily lately, including one in St. Louis the other day. That one made me sad since two years ago this week we were there having one of our best family trips ever.
Anyway...before all of the Jacob stuff happened, I actually had a quite productive Friday. I ended up taking off the afternoon at the last minute (a combination of the waning nice weather and complete lack of motivation to work, although I did complete a big project that morning), and despite the 80 degree heat I managed to chop more than half a foot of new growth off our burning bushes and clean up a small evergreen, and I also tried to hack away at another evergreen to get at our gas meter that needs to be changed out. Not sure I was very successful, but I made enough progress that I might call them to look at it again. How they've been reading it all these years with it that covered, I have no idea. Makes me wonder! I also managed to organize a couple kitchen drawers that desperately needed it, and ran to the garden store to get my annuals and the garden plants I wasn't starting from seeds. I figured I could do my flower planting on the porch in the rain Saturday, but those plans got derailed by baseball, the boys' return, and my subsequent blahs. I did rebound on Sunday by getting a few bags of mulch, potting soil, garden soil, and a shepherd's hook at Lowe's. I put out the three bags of mulch (I need more but just didn't feel like loading a ton up that day since I couldn't find a good cart and everything was damp) and planted all of my pots and planters. I figured I needed to get them done and in pots before the weather shifted entirely, although they're all still on the porch because of the frost and rain situation. I did plant six impatiens under our front tree Friday night because I desperately needed to clear out the dandelions and shoots from that area anyway. I was pretty pleased with what I accomplished, though, and look forward to watching them grow. Later in the weekend I reorganized a couple kitchen cabinets that had gotten out of control and vacuumed and wiped down my car, which had gotten rather messy after a full winter, a couple road trips, and the start of "grass season". I wanted to be a bit more productive with my weekend, but those tasks all felt good to get out of the way. I still have a lengthy list for another day, of course.
The only other thing of note recently is that Carter had his last orchestra concert of the year last Thursday. Aside from the fact I was fearing illness because of the completely stuffed up woman a row and a few seats away from me (and I have been fighting something off this week), it was a really good concert! The 6th and 7th grade bands were a little rough, but the 8th grade one was great, and the song selections were really fun! The orchestra is a little smaller than band so they could keep them all in one big middle school group, and as a result, they sounded really good!
They played five pieces and these were my favorites:
Starlight - a very tough piece, and even though I didn't recognize it, I think it's a relatively well-known song?
Rosin Eating Zombies from Outer Space - This one was hilarious because it was preceded by one of the orchestra members (not coincidentally, one who had a main part in the winter musical) running out and claiming that his rosin was glowing green! Suddenly it "attacked" the conductor and she dropped to the floor--impressive considering she was in a dress! She "recovered" in time to conduct, but I guess the students didn't know that was going to happen, so they weren't entirely sure what was going on! But this song had so much personality, including the serial killer screeches.
Any Way You Want It/Don't Stop Believing - It's always nice to have a song you recognize, and this fit the bill nicely. A little Journey for our listening pleasure!
So, here we are...facing down Memorial Day weekend already. Jacob has a mere three weeks of school left (plus exams) and Carter has just over a month. I can't really believe we're here already, as much as my body has been craving summer sleeping-in for weeks. It would help if the weather would turn around and if we could get some good answers (and good news) about all of this health stuff. I'm tired.
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