A Couple of Health Updates, a Wedding, Father’s Day, 4th of July, and a Gift from Some Fans

  • Post category:Holidays / Illness
  • Reading time:5 mins read

We’re in summer mode at work when we try to get a bunch of projects done before the upcoming school year, so I frequently lose track of time. I did manage to squeeze in a week of vacation time, but even that was a busy week with projects around the house followed by a couple of days out of town for a wedding.

I’ve been so busy that time seems to have flown by and I didn’t realize that it had been about a month since my last post until the 4th of July. That’s when it hit me that the last post I made was at the end of May. I blinked and June just disappeared. Fortunately, not much new happened during June so this post should be relatively easy and quick to write.

 

 

Breathing Issues

Nothing new here, unfortunately. We’re still trying to figure things out. I have to say that I am really glad that Stacy has the ability to remain calm in certain situations. James had one of his episodes in early June where his sats dropped. I mean really dropped. Almost to zero. I am not kidding. His pulse ox was showing that his sats were 7. Not a typo. Seven!

Stacy didn’t immediately freak out, but I may have. She calmly assessed the situation, noted that he was still breathing, although a bit labored, and decided to pull out the finger pulse ox to take a second reading. Much better than 7, but 45 is still well below where he should be at.

Two medical monitoring devices sit side by side. The device on the left shows SpO₂ of 7 in red and a heart rate reading of 168 in bright green numbers. The device on the right is a pulse oximeter displaying “%SpO₂ 45” and “PR bpm 168” in blue and yellow text. Both screens show the same heart rate, but vastly different oxygen saturation readings.
The pulse ox attached to his toe was reading his sats at 7; the finger pulse ox was reading 45

 

His heart rate of 168 is also much higher than normal, and usually means that he is stressed or in a panic. He was obviously having some breathing difficulties, which would explain both the low sat numbers and the high heart rate.

Like I said, Stacy remained calm, gave him a nebulizer treatment to try to open up his airway, and then put him on the ventilator that he recently started using. Not sure if it was the neb or the vent, or a combination of the two, but his numbers improved, and he slept peacefully through the night.

 

James lies in his cushioned recliner wearing a breathing mask connected to a blue tube that leads to nearby medical equipment. He rests on patterned bedding with a stuffed animal tucked near his shoulder. On the carpeted floor behind him, a dog lies relaxed. Beside the bed, medical devices sit on a floor. The room feels like a lived‑in home space with nighttime respiratory support in place and the quiet presence of a pet nearby.
Using his ventilator to help with his breathing

 

James has been using the ventilator for about two months now and we really think it is helping him. We recently found out that there is a recall for it, though. Apparently, they use some sort of foam in the ventilator (and other products) to reduce sound and vibration that can break down over time. If this happens, pieces of this foam, or chemicals contained in the foam, can be breathed in or swallowed by the person using the ventilator.

We’re not really sure what to do now. Do we keep using it nightly as prescribed, or just use it as needed? Stacy has already called the company who we received the ventilator from, and we’re waiting to find out what our options are. If you or someone you know is using a Philips ventilator, or another one of their respiratory products, information about the recall—including a list of recalled devices—can be found at this Philips webpage.

 

 

Tailbone Wound

The tailbone wound that I mentioned in my May post has continued to get worse. It’s really bad now. It’s to the point now where we believe we can actually see the tailbone. We have received some wound care stuff from palliative care and we’re trying to keep it clean and covered so that it doesn’t become infected. Stacy is going to start making some calls to wound clinics and plastic surgeons to see what our options are.

We think that when he had his spinal fusion done two years ago, the straightening of the spine pushed the tailbone down a bit to the point where it started breaking through the skin. Hopefully we’ll be able to get this taken care of soon. The last thing we need is for James to get an infection, especially with that exposed bone.

 

 

Father’s Day Weekend Wedding

A three‑photo collage shows Jeff and James lying together outdoors on a blanket. Both wear plaid shirts, and the background in each image includes grass and trees, giving the scene a relaxed park‑like feel. Torn pieces of newspaper are arranged decoratively around the photos. On the right side, handwritten‑style text reads “Love you Dad,” adding a personal, affectionate touch to the collage.

 

Father’s Day weekend was a bit hectic. We had a wedding to go to in Wisconsin, and since Maggie couldn’t go with us, we dropped her off Friday morning at a doggy daycare that also does boarding, came home, packed up the van, and drove up to Lake Lawn Resort. It was a beautiful Saturday afternoon wedding on the lakefront. If you’re looking for pictures of the wedding, sorry, I don’t have any to share. I do have a couple of family pictures though.

 

Jeff, James, and Stacy gather indoors near a large window that looks out onto an outdoor seating area, a swimming pool and a lake. James sits in his wheelchair wearing sunglasses, a colorful face mask around his neck, and a blue shirt. Jeff stands behind him in a blue shirt, and Stacy kneels beside him smiling in a sleeveless top. Wooden furniture and decorative lighting give the space a relaxed restaurant or café feel, with the bright outdoor view adding to the calm, pleasant atmosphere.
Lunch at the Lookout Bar Restaurant

 

Jeff, Stacy and James sit together in front of a large white wooden chair with a sign that reads “LAKE LAWN RESORT.” Behind them is a lake with sailboats, a dock, and a tree‑lined shoreline. Jeff, on the left, wears a blue shirt with white text, Stacy, in the middle, wears a black shirt with yellow text, and James sits on the right in his wheelchair wearing a colorful neck support and dark clothing. The bright outdoor setting and waterfront backdrop give the scene a relaxed, summery feel.
Family pic by the lake

 

Stacy, Jeff and James pose together indoors in front of a stone fireplace with a wooden mantel. On the mantel sits a large ceramic vase filled with yellow flowers and a rectangular sign that reads “LAKE LAWN RESORT EST. 1878.” On the left, Stacy stands wearing a pink floral dress. In the center, James sits in his wheelchair wearing an orange shirt and a colorful neck support. On the right, Jeff kneels beside him wearing a light blue dress shirt and gray pants. The cozy lodge setting gives the scene a warm, welcoming feel.
All dressed up for the wedding

 

On Sunday we headed back home, stopped to pick up Maggie, got home, unpacked the van, and then went to Stacy’s parent’s house for Father’s Day. It was a good weekend, but a bit exhausting.

 

Jeff, James and Papa are gathered outdoors on a concrete walkway beside a house and garden. James sits in his wheelchair, which has supportive padding and accessories. Jeff and Papa stand behind him: Jeff on the left wearing a red shirt with yellow text, and Papa on the right wearing a yellow polo. Green bushes, plants, a wooden fence, and part of the house with siding and a deck fill the background, giving the scene a relaxed residential feel.
Me, James, and Stacy’s Dad

 

 

4th of July

James lies his cushioned recliner with a small stuffed dog resting on his shoulder. He wears a white shirt decorated with printed text and graphics, including sunglasses filled with red, white, and blue stars and stripes. A festive border surrounds the image, featuring fireworks, colorful stars, and the word “Celebrate” in bright, playful lettering at the top. The overall scene has a cheerful, patriotic feel.

 

We hope everyone had a safe and fun 4th of July. Ours was pretty standard in that we stayed home and didn’t go anywhere. We’ve have taken James to a 4th of July parade in the past, but it’s usually just too hot for him. He doesn’t sweat to keep himself cool and easily overheats. So, we just stay home in the cool air conditioning.

 

 

A Gift from Some Fans

James has some of the best fans that occasionally send gifts to him. In early June a couple of his fans sent him some Cubs baseball cards. The included card reads:

“Hello James.

We are baseball fans, too! My husband name is James also. He collects baseball cards and though you might like some of your favorite player. We like the Angels and Yankees. We always wanted to go to Chicago to see both teams, but never had the chance.

Best regards,

James and Gwendolyn”

 

A collage combines several images centered around James resting on his cushioned recliner with a sheet decorated with cartoon monkeys. Near his hand are baseball trading cards featuring various players. A handwritten note is included in the collage, expressing shared baseball fandom, mentioning that the sender’s husband is also named James, and offering cards of favorite players. Surrounding these elements are photos of a baseball stadium, including views of the field, scoreboard, and spectators in the stands, adding a sense of connection to the sport.
A couple of his awesome fans sent him Cubs baseball cards