Continuing Respiratory Issues, Father’s Day, 4th of July, and Miscellaneous Stuff

As promised, here is a monthly James update. Fortunately, it looks like it will be a relatively short post. I have transitioned from working remotely for about three months to going back to work and working nights. As a network guy, there is only so much I can do remotely. Since summer is the time when we do the majority of our upgrades, I have to be onsite to do a lot of the work. Working from midnight to 8:30 am has been a bit rough. It’s nice because there’s not many people there so my risk of contracting covid and bringing it home to James are minimal, but the work and sleep schedule is hard to get used to. I’m working when most people are sleeping, and sleeping when the sun is still out. Hopefully I’ll get used to it someday, but so far, it’s been pretty rough.

 

 

Health

James has still been dealing with his respiratory episodes. On June 21st he started to have some difficulty breathing again so we put him on 1 liter of oxygen. A nurse for palliative care stopped by the next day to listen to his lungs. She said that she could hear some congestion in right lung and a little bit on the left side as well. She placed a call to James’ pulmonologist to ask about getting a prescription for a steroid and an antibiotic. He agreed and started him on a 10-day round of both. We started the steroid that night and the antibiotic the next morning.

 

James lies on his cushioned recliner, covered with a blanket featuring red and black patterns. He has short hair and an oxygen tube positioned near his nose. A stuffed animal resembling a dog rests against his shoulder. The sheet beneath him shows a blue‑and‑gray whale pattern, and a cloth or pillow supports their head. In the background, a gray couch with a red blanket draped over it sits near an IV pole or medical stand. The overall scene is calm and home‑like, with medical equipment nearby for support.
June 23rd: Needed a little boost of oxygen to keep his sats up

 

In addition to the antibiotic and steroid, Stacy was also giving him nebulizer treatments. A couple of days after being on the drugs and getting the nebs, Stacy started to wean him off of the oxygen to see how he would do. He did pretty well. There were times when he was fine without it, but other times he just needed a little oxygen boost. As of this past Tuesday he has been off of oxygen completely.

 

James lies on his cushioned recliner, covered with a blanket patterned in red, black, and white. A stuffed animal resembling a dog rests against his shoulder, and a white cloth is placed under their chin. Behind them is a gray couch with a red blanket draped over the back, and a metal IV pole stands nearby. The room has carpeted flooring, giving the space a soft, home‑like feel.
June 30th: Look Mommy, no oxygen!

 

James had his one year post spinal fusion surgery checkup in mid-June and it all looks good. He is leaning a bit in the first picture. I was trying to hold him upright, but he started sliding. It’s funny how you can see my wedding ring and fingers by James’ neck in that first x-ray pic. You can also see the VNS in his chest in both x-rays.

 

An upright AP X‑ray of James' torso shows his spine with long metal rods and multiple screws running down the vertebral column. A circular implanted device sits near the upper chest. Measurement lines and an angle reading “2.2°” appear over the image. Along the left side of the display, smaller reference spine images are visible. The overall view highlights the full length of the spinal hardware and alignment markers.
1 year post spinal fusion checkup, front view

 

A lateral upright X‑ray shows the full side view of James' skull, neck, and spine down through the thoracic and lumbar regions. Metal rods and multiple screws run along the vertebrae, indicating spinal hardware. Labels such as “LATERAL,” “UPRIGHT,” “L,” and “TSPINE” appear on the display, along with a timestamp and other small technical markings. The image highlights the alignment of the spine and the placement of the surgical implants.
1 year post spinal fusion checkup, side view

 

 

Father’s Day

Stacy, James, and Jeff sit together on a blanket outdoors near a tree, with a house and fence visible in the background. Stacy and Jeff sit close with James positioned between them. The setting is grassy and feels like a backyard or park. A teal border frames the image, and a small graphic in the lower left corner reads “FATHER’S DAY” with a stylized mustache beneath the text. The overall scene conveys a relaxed family moment.

 

We stayed home for Father’s Day this year instead of getting together with Stacy’s family like we normally do because James had been struggling with respiratory issues. Even if he wasn’t having issues, I am not sure if we would have gotten together with family anyway. We don’t want to risk James getting covid. Besides, with me having to be at work at midnight Monday morning, I am not sure I could have gone anyway. I normally go to bed at around 2 o’clock in the afternoon. I was with my family, so I guess that is all that really matters. Someday this pandemic will go away (I hope), and we will be able to resume our normal family holiday get togethers.

 

A two‑photo collage sits against a white background. The top photo shows Jeff holding James as a newborn wrapped in a hospital blanket, leaning in to kiss his forehead. The bottom photo was recently taken and shows Jeff outdoors, holding and looking at James. On the left side of the collage, bold text reads “My Dad is my Hero,” with “2020” printed below. The images together highlight a father’s bond with his son at two different stages of life.

 

 

4th of July

Seems a bit ironic that we had to celebrate our Independence Day in quarantine, doesn’t it? It’s a holiday where we celebrate our freedom, yet we’ve lost a lot of those freedoms. It does make you value our independence even more, though.

 

James lies on his cushioned recliner wearing a white shirt printed with the phrase “proud tubie an american.” and a graphic of sunglasses decorated in an American flag pattern. A plush dog toy rests around his neck. The image is framed with a blue border filled with red, white, and blue fireworks and stars. In the bottom left corner, stylized text reads “God Bless America.” The overall look blends comfort items with a festive, patriotic theme.

 

 

Miscellaneous Stuff

James’s one-on-one school nurse came over to hang out for a bit and go for a walk. We’re still really sad that she won’t be his nurse in the fall (assuming schools reopen), but we know she will always be a part of our lives.

A two‑part collage sits over a background of colorful paper‑cutout figures holding hands. The top section shows Stacy, James, and his nurse in a living room. James lies on his cushioned recliner with medical equipment nearby, including tubing and his pulse oximeter. His nurse sits on the floor wearing a mask and holding a water bottle. Stacy lies beside James, smiling toward the camera. The room includes a couch, a side table with assorted items, and blankets and pillows in bright patterns. The bottom section displays a Fitbit app screenshot showing daily activity totals: “6,678 Steps,” “3 Miles,” “1,526 Cals,” and “57 Mins.”

 

One of James’ local fans went on a trip to Kuwait and brought him back a shirt. How cool is that?! I wonder if we should turn this into a thing. If you go on a trip, send James a shirt. Depending on how many people actually do it, we might right into an issue of having way too many shirts. Maybe postcards would be a better idea. We’d also probably have to get a box at the post office because we wouldn’t want to give out our address. We’ll have to think about this one.

 

James lies down wearing a bright blue T‑shirt decorated with colorful graphics. The shirt’s design includes a yellow star, a red heart, palm trees, a camel, and stylized desert shapes. Printed text reads: “Someone who loves me went to KUWAIT and got me this T‑SHIRT.” The overall look blends a cheerful souvenir design with a relaxed resting pose.
A fan brought James a shirt from a trip to Kuwait

 

We received James’ Extended School Year (ESY) kit in the mail. It included several books and a paper on “Common PreK Milestones”. Really? You do know he will be going into 6th grade, right? In all seriousness, though, we know that intellectually James is still at a PreK level. It just kind of rubbed us the wrong way.

 

The collage has two sections. The top shows a close‑up of a PreK literacy guide titled “Your Guide to Supporting Literacy at Home.” Visible headings include “Common PreK Milestones,” “Language,” and “Reading,” with partial lines of text beneath them. The bottom section shows several children’s books spread out on a table. One book titled “WHO HELPS US GET AROUND?” features a yellow bus and a green airplane on the cover. Other colorful Scholastic PreK‑level books are arranged nearby, including a book titled “Lion” by Miriam Busch. The overall layout highlights early‑learning reading materials.