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.

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 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

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.

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.

4th of July

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”