An October to Remember (for Christopher)

Holy October Batman! Just as we got rolling with school, October threw us a major curveball! Poor Christopher landed in Primary Children’s Hospital for a week with MRSA. (Here’s where you say “What the actual F*ck, MRSA?!?”).

Let me be clear that with 3 boys, I figured we’d eventually need an emergency room, but I thought it would be for stitches, a concussion, a broken bone–regular stuff. I did NOT anticipate my first ever emergency room experience was going to be full send with a life threatening infection. Here’s some summary of that series of events that I wrote along to update friends and family on Facebook and and will also document here:

10/14 What a wild week we’ve had. Last Tuesday Chris started experiencing heel pain. I chalked it up to Sever’s Disease (very common in growing 11 year old boys). Wednesday he was limping but I sent him off to school (and ordered him new shoes and heel inserts). At Noon the school called letting me know he’d thrown up in Science class. Brought him home and discovered he had a fever so ruled out Covid/Flu A & B with a home test. Thursday morning his fever was HIGH (104 without meds and 102 after dumping meds into him) so I called the pediatrician and they got us in same day. Now his heel was visibly swollen so we did a CBC and X-ray. Both were unremarkable except for an elevated CRP (a sign of inflammation). We went home having ruled out the really scary stuff with instructions to come back Saturday if he was still struggling. The next day (Friday) his shoulder started to also hurt. I thought the fever was trending in the right direction but his shoulder was enough to send us back to the pediatrician on Saturday. I again ruled out Covid/Flu A & B via home test and we did a strep test in clinic. We were instructed to head to Primary Children’s Hospital ER on Monday morning if things were not improving. Well, spoiler, the pain got worse and we were still fighting a fever, so Monday 10/13 we reported to the ER department. After an X-ray, and bloodwork we were moved to inpatient. We had an MRI and shoulder joint aspiration which confirmed we have osteomyelitis (bone infection)…specifically MRSA, an antibiotic resistant staph infection. This morning Chris had surgery on his shoulder to clean and flush the joint capsule. He has a drain and they are testing and culturing lots of blood and fluids. We are still wait and see on if they need to drain his heel/ankle. We are inpatient here through at least the weekend. We need his labs to trend in right direction for at least 48 hours before they’ll consider sending us home. It will be slow going but Primary Children’s is a great hospital  (one of the best in the entire Intermountain West) and it sounds like I did exactly what we needed to do to get him here. The good news is the infection didn’t spread to his heart and so far no other joints are becoming inflamed. Apparently this is more common than one would think…the infectious disease team has seen 3 cases this week without obvious trauma or cause. Essentially just bad luck for an otherwise healthy kid. If anyone wants to FaceTime or visit please reach out by text! This is also your reminder to trust your gut and advocate for your healthcare. Much Love. S. ~

10/15: Ortho seemed unconcerned with the heel this morning. They feel there’s inflammation but not enough fluid to warrant draining anything. Just angry tissue. So not anticipating more surgeries. His shoulder drain has so little in it the nurse couldn’t get any emptied this morning. That’s also a good sign. And the blood labs said his antibiotic is at the correct therapeutic range. All good news. With any luck the drain will come out tomorrow. 10/16 I got to be on speaker phone when infectious disease did rounds. They are very happy with progress. His culture from yesterday hadn’t grow anything yet (still could) but his earlier cultures grew FAST. They are hopeful today they’ll have a plan for which oral antibiotic it responds to and can trial that soon. Once oral antibiotics start he has to take it in hospital for at least a day to make sure he tolerates it well since we’re looking at 6 weeks. His inflammatory markers are trending down. We’re already a little lower than where he was at the pediatrician’s office last Thursday. Drain is out and ortho is letting infectious disease drive the bus. All good news! Thanks to friends for reaching out. Mostly I notice Chris gets very tired very fast and doesn’t have much appetite. Probably side effects of the heavy antibiotics. He’s had virtually no pain since surgery but we plan to get him moving and challenge him more now that the drain is out.

 

10/17: Infectious disease is still happy and we’ve had 48 hours of clear blood cultures. His next dose of antibiotics will be oral instead of IV…this means we’re on track to go home tomorrow! We’ll get our first peek under his surgical dressing today and maybe an actual shower. We’ll have a slow return to normal life. Chris is still limping and not using his surgical arm. We haven’t had a day yet without a nap. He won’t specifically have restrictions but we’ll be doing some outpatient PT to get range of motion back and probably easing back into full day school. Infectious disease confirmed this in no way should impact his long term health or immune system. Just dumb luck to end up with this infection but we’re on the mend!

 

10/18 Update: We broke free! (Actually Infectious Disease gave us permission to leave). Chris’s inflammation numbers were up a bit today. No one is insanely alarmed, just something to watch. We’re hopeful that the extra movement is just flushing some stuff out. We were sent home with oral antibiotics (3x/day for 6 weeks) and will have to monitor for GI issues (specifically C. Diff). He has a repeat outpatient blood draw on Wednesday and a telehealth visit with Infectious Disease on Thursday. What we DON’T want to see is the return of fever, increasing pain, or severe GI upset. I read Chris’s surgery and other provider notes today. It’s no wonder his shoulder hurts! Our official technical diagnosis was calcaneal osteomyelitis and shoulder septic arthritis with the setting in of MRSA bacteremia. We will do a VERY slow return to school and thankfully have 5 days of fall break starting this coming Thursday. Being home has immediately improved Chris’s mood and a few solid nights of sleep for all of us will do us good.

10/21 It’s good to be HOME. We have a lab draw today and follow up appointment tomorrow that will tell us a lot. We have a follow up with orthopedics in 2 weeks and will schedule some physical therapy for November. Hopefully slow steady healing from here on out.

   

10/27 A little Christopher Update: Our labs last week were trending in the right direction. We had a Telemed visit with Infectious Disease and they seem happy with our progress. We’ll have another lab draw and follow up with them mid-November. If all goes well, we’ll graduate from antibiotics around Thanksgiving. Today we had our first follow up with the orthopedic surgeon who worked on Chris’s shoulder. He seemed happy with Chris’s current function. I’m learning this is more of a marathon than a sprint. We’re set to start physical therapy in 2 weeks and then follow up with the surgeon again at the end of November. Chris doesn’t really have pain, just muscle weakness due to his shoulder surgery and stiffness in his heel. He’s a left handed guy–and of course it was his left shoulder. He sort of moves like a little old man, partly due to weakness, and partly due to fear of it hurting again. His team is happy with where he’s at since it’s only been 2 weeks, and that means I’m happy too.

11/12 Hopefully one of the final Christopher updates: just had a Telemedicine visit with the infectious disease team. Chris’s CRP (inflammation) marker was back to normal as of Saturday’s labs. We just have one more blood draw next week to keep track of his white blood cells (the antibiotics can make them too low). Chris will be happy to stop getting blood draws, but he’s been a rock star about them! Then we have a follow up on 11/24 with the orthopedic surgeon. We should be done with antibiotics at Thanksgiving. I’m glad he has been tolerating them so well and not had GI issues. We started physical therapy on Monday for his shoulder. We’ll probably have some lingering physical therapy appointments and maybe one more follow up with orthopedics but we’ll have him good and ready for ski season!

   

That was the end of my Facebook updates, but let me add a few things worth noting after having some time to reflect on this whole event. First off, I am so thankful I trusted my gut and got him care quickly. Also I’m immensely thankful we have an amazing hospital only 20 minutes from our house which allowed Jason and I to switch off nights at the hospital. This hospital serves a 5 state area and not all caregivers get the luxury of sleeping in their own beds during their stays. I’m thankful that Jason and I worked as a well coordinated team–a very tired team at times–but coordinated nonetheless. Primary Children’s Hospital is a place that you should hang out if you want to feel insanely thankful for the health of your kids. We saw kids there every day that had spent countless days, weeks, or months there for appointments. We also saw kids that were in crisis without a solid family support system or resources. We were fortunate that by the time we were feeling well enough to explore the child life resources it was time for us to pack up and head home (Chris only played hospital BINGO on the TV once). As my therapist put it, it was an event where you could see beauty in the horror, which is a luxury not everyone gets.

I’m also super thankful the school was so helpful and willing to work with us. We missed a total of about 10 school days right at the end of his first quarter in middle school and all of his teachers were very understanding. He’s a great student so they froze his grades so homework wasn’t piling up on him. They also switched him out of PE into an art class for second quarter so that I didn’t have to worry about him overdoing it while he was still limping, tired, and on heavy antibiotics. The school nurse was awesome at making sure he got a dose of antibiotics at school each day and helping coordinate him getting around in the wheelchair for a couple weeks that we used it. I was handling so much with juggling appointments that not having any trouble with the school attendance piece was clutch.

One of the beautiful things that came from our hospital stay was the confirmation that our boys really do love each other! It’s silly to think that they don’t, however the day to day fighting and bickering makes it hard to see what’s deeper. Andrew and Chris typically couldn’t even stand the sight of each other across the breakfast table, but the minute Chris was hurting Andrew was the first to offer his stuffed animals for support and turn his room over to Chris until he was well enough to climb the ladder to his bunk bed again. William tried to be stoic, but the stress of Chris being in the hospital weighed on him and there were a few tears. The boys had really never spent more than 1 night apart so this was a big deal for each of them in their own way. It was comforting as a parent to know we’re doing something right and perhaps one day they’ll all be good friends.

Chris doesn’t seem to have any lasting trauma from the entire adventure and on the plus side he became an expert in blood draws and pill swallowing. The moment that sticks out to me as when I knew he would be okay, was when the child life specialists were telling him that sometimes they have therapy dogs visit and he piped up with “If I’m being honest, I’m really more of a cat guy”. Lol. I would have happily accepted a therapy dog visit even if Chris didn’t feel like he needed one!

October was a month that lasted 3 hours and 378 days at the same time. I’ll summarize the rest of October and our fall in a separate post, but October’s winner is Christopher. 🙂