Pneumonia, Monarch Butterfly Release, Back to School, and a Birthday Sneak Peak

  • Post category:Hospital / School
  • Reading time:8 mins read

Pneumonia

For the first several years of his life, James would usually come down with pneumonia around Thanksgiving. It was such a normal occurrence that Stacy started calling November Pneumo-ember. A little play on words, combining pneumonia and November. I don’t know what changed, but for the past few years, he’s been fine throughout November, but instead came down with pneumonia at other times of the year. Now that I say that, just watch him get pneumonia this November.

Looking back at our medical notes, 2018 was the last time he had pneumonia in November. In 2019, he got it in April, and again in August. In 2020, it was August again. Last year it was July and again in August. And this year it was August again.

I am going to put a little asterisk here. For those of you who are regular readers of this blog, you may recall that James had “pneumonia” in early November last year. I am not counting that one, because palliative care suspected that he had pneumonia, but we did not take him to the hospital for an x-ray, so it wasn’t confirmed. We treated it at home with antibiotics and a steroid and it didn’t require a hospitalization. 

Now that that’s cleared up, did you catch what I said in the last sentence of the second paragraph? James had pneumonia at the beginning of this month. It used to be a winter thing for him, but somehow changed to summer. The weather has been normal for this time of year, we didn’t have any freak cold snaps that would have been a shock to his system, so we have no idea what caused the pneumonia. I mean, we do know what causes his pneumonia. Because he can’t suck or swallow to clear his secretions, he sometimes aspirates those secretions into his lungs, which is what brings on the pneumonia. Really, it can happen at any time of the year. It’s just weird that it used to happen so frequently during the colder months, but now it’s happening in the warmer summer months.

Now that I’m looking at the second paragraph again, I realized something. The last time he had pneumonia in November was in 2018. He had his full spinal fusion in May of 2019. In the three years since his spinal fusion, he’s had pneumonia in either July or August, and nothing during any winter months. Is that just a coincidence, or is the spinal fusion the thing that altered when he gets pneumonia? Sounds weird, doesn’t it?

Like all of the other pneumonias, this one came seemingly out of nowhere. He was having some respiratory issues on the night of the 2nd so Stacy put him to bed with some oxygen hoping that he just needed that little boost of 02 to get through the night and he’d be better in the morning. Well, the following morning he still needed oxygen to keep his sats up. Stacy put a call into the pulmonologist who sent over prescriptions for an antibiotic and a steroid, which are the go-to drugs for pneumonia.

Unfortunately, we felt like we couldn’t wait for the drugs to start doing their thing. James seemed to be getting progressively worse, so we ended up taking him to the ER. They did their usual assessment and then started the tests: chest x-ray, bloodwork, viral panel, and a urine analysis.

It wasn’t much of a shock that the x-ray showed pneumonia. Bloodwork showed elevated white blood cell (WBC) count, which is an indicator of an infection; slightly above normal red blood cell count; slightly above normal hemoglobin; and high glucose level. Because of the pneumonia, they started working on the process of prepping a room for him because they were going to admit him. They gave him a dose of an antibiotic in the ER while we waited for his room to be ready.

 

An X‑ray of James' chest and upper torso appears on a GE Optima machine screen. The spine is visible with metal rods and screws along it, showing surgical stabilization. The ribs and clavicles frame the image, and an implanted circular device sits on the right side of the chest. Interface elements around the X‑ray show protocol options, battery indicators, and partially obscured patient information. The display looks like a typical radiology workstation, presenting both the image and the technical controls.
Chest x-ray in the ER showed pneumonia

 

Then something weird happened. We waited maybe an hour until they came down to transport him up to his room. We were in the process of transferring him from the ER bed that they took him up on to the bed in the room, and we noticed hives and a rash on part of his face and on a few other parts of his upper body. We brainstormed with the nurses about what it was and what may have caused it. The only thing we could come up with is that it may have been an allergic reaction from the antibiotic they gave him in the ER, which we thought was weird because he had been on that antibiotic several times without an issue. They gave him the same antibiotic the following day and no reaction, so maybe it wasn’t the antibiotic that caused the hives and rash after all. Weird.

That was a Wednesday, and he was already showing signs he was feeling better on Thursday.

 

James lies in a hospital bed with a nasal oxygen tube. Medical equipment sits behind him, including monitors and a computer keyboard. Large stylized blue text reading “THURSDAY” appears across the top of the image. The scene feels clinical but calm, capturing a snapshot of care and recovery during a hospital stay.
Already feeling better the next day

 

I don’t know what it is about the hospital, but somehow he gets better quicker when he’s there. What are they doing differently than we do at home? He gets antibiotics, which we can do at home. He gets nebulizer treatments, which we can also do at home. Is there something else that they’re doing that we’re not? Stacy often complains about a sore throat when she spends the night at the hospital with James because the air is so dry. Maybe that has something to do with it.

Or maybe it was his new friends that cheered him up and made him feel better so quickly. Child life dropped off a little stuffed dinosaur for him. We named him Spike.

 

James lies in a hospital bed with an oxygen tube in his nose, resting with his mouth slightly open. His hand holds a plush red‑and‑orange stegosaurus, tucked close against the blanket. Medical tubing, monitors, and supplies surround him, with an IV line visible near his arm. The scene feels quiet and tender, capturing a moment of comfort during medical care.
His new friend Spike

 

A couple of hours later he won a game of BINGO and received a large stuffed horse as a prize. Say hello to Patches:

 

James rests in a hospital bed with an oxygen tube in place. A large stuffed horse made of red, green, and white plaid fabric lies beside him on the bed, its mane made of black yarn. Medical tubing and monitors sit in the background, giving the room a clinical feel. The scene is quiet and tender, showing a moment of comfort during recovery with the soft toy close at hand.
Another new friend, Patches

 

He was doing well enough by Thursday afternoon that they didn’t think he had to spend another night, so he was free to go home. Of course, it always takes a couple of hours between when they say he can go home and when he can actually leave. Discharge paperwork said to keep up with the nebulizer treatments and to take the antibiotic that the pulmonologist prescribed right before we brought him to the ER.

 

The photo shows the back of James seated in his wheelchair, which has a headrest labeled “Whitmyer.” A pulse oximeter is mounted behind him, displaying green and red digital readings with wires running from it. He is in a hospital hallway with wooden floors and beige walls, lined with medical equipment and supplies. Ahead of him, two people walk down the hall carrying bags. The scene feels clinical but calm, capturing a moment of movement and monitoring within a care setting.
Going home

 

 

Monarch Butterfly Release

The week before his stay at the hospital, Stacy took him to our park district’s nature center to watch them release Monarch butterflies into the wild. He learned about their life cycle, from egg, to caterpillar, to chrysalis, to beautiful butterfly.

 

James looks down at two plastic containers outdoors on sunlit ground. On the lid of one container, a monarch caterpillar crawls along the surface. In the other container, several green leaves rest inside, with another monarch caterpillar moving across them. The setup looks like a small, hands‑on space for observing or caring for the caterpillars, with a simple, natural backdrop of dirt and scattered light.
Monarch caterpillars

 

Inside a small clear enclosure with mesh ventilation at the top, several green chrysalises hang in a neat row from the upper edge. Below them, a butterfly with orange‑and‑black patterned wings rests on a rock. The space is simple and contained, set up for watching the stages of metamorphosis with good visibility of both the chrysalises and the newly emerged butterfly.
Monarch chrysalis

 

A wooden picnic table outdoors holds a clear plastic container with a black lid, and inside it a monarch butterfly or chrysalis is visible. In front of the container sits a small sign that reads “Monarch Butterfly — LOOK UP,” with additional smaller text beneath it. Behind the setup is a green‑and‑white mesh enclosure used for raising butterflies, along with two small black plant pots. To the left, a red toy wagon labeled “Town & Country” rests near the table. In the foreground, James, wearing sunglasses, looks toward the display. The scene feels like a casual outdoor learning moment focused on monarchs.
Monarch butterfly waiting to be released

 

A few years ago, I put together a butterfly garden in our front yard to do my part in saving the Monarch butterfly. The first couple of years it did well. We witnessed several Monarchs go from eggs to caterpillars to chrysalis, and watched as they came out as butterflies. It was really cool to watch the process. And pretty amazing. Unfortunately, these past few years have not been so good. We’ve had wasps move in and they have been killing the caterpillars. I found one nest and got rid of it, but there must be another one around somewhere because I keep seeing them flying around the garden, hunting for the caterpillars. I’m still trying to get rid of them so someday we can get back to raising Monarchs.

 

 

Back to School

A six‑panel collage marks James’s first day of 8th grade. Five of the panels show him seated in his wheelchair outdoors, wearing sunglasses, a gray outfit, and red wrist guards. In each photo he holds a sign that says “FIRST DAY OF 8TH GRADE!” One panel includes Stacy standing beside him, smiling warmly. The sixth panel shows his backpack attached to the back of the chair, gray with red‑and‑black designs. At the center of the collage, bold black text on a white background with a yellow border repeats the milestone message. The whole layout feels proud, upbeat, and full of first‑day energy.

Eighth grade. His last year in elementary school. A year from now he will be in high school. I can’t even grasp that. It’s crazy to think about. How did a kid with this many medical issues and challenges make it this far? Many of you will probably say it’s because he has awesome parents. We can’t take all the credit. He has had some awesome teachers, therapists, nurses, and doctors that deserve a lot of credit, too. We wouldn’t have made it this far without them.

 

A bright yellow collage shows two milestone photos of James. The top image is from his first day of Pre‑K: he’s lying down, wearing glasses, and holding a small sign that says “First Day of Pre‑K.” The bottom image shows him years later on his first day of 8th grade, sitting in his wheelchair and holding a sign that reads “First Day of 8th Grade.” Cheerful graphics decorate the background, including a smiling sun and a starburst labeled “Be Amazing.” Text above and below the photos reads “From Pre‑K” and “To 8th Grade,” highlighting his growth across the years.
From Pre-K to 8th Grade

 

 

Birthday Sneak Peak

A colorful Teenage Mutant Ninja Turtles–themed birthday invitation features the four cartoon turtle faces, each with their signature mask color. Bold, playful text announces “COWABUNGA! JAMES IS TURNING 13” and invites guests to “LET’S SHELL‑A‑BRATE” with pizza and cake on Sunday, 8/28/22, from noon to 4 PM. A white block obscures part of the details, and the bottom line reads “REGRETS ONLY BY 8/21/22.” The overall design is energetic and kid‑friendly, built around bright colors and turtle‑themed puns.
13th birthday party invitation

 

If you’ve been following James for a while, you know that we have a theme for each of James’ birthdays. This year Stacy decided to go with a Teenage Mutant Ninja Turtles theme, because James will be turning 13. Yep, he’s going to be a teenager! I said it in the previous paragraph, and I’ll say it again. We never thought he would make it this far.

Stacy has been doing a birthday countdown on his Facebook page, where she’s been posting pictures from his previous birthdays. I’ll make a collection of those pictures and try to post them here on Saturday, the 27th. His birthday party is on the 28th, so look for the party pictures to be posted on the 29th or 30th.