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Health Scare Update

For those of you that read the previous post, you may recall that we had a bit of a health scare. A doctor, though palliative care had prescribed a transdermal patch to help with James’ secretions. The patch is actually intended to treat high blood pressure, but one of the side effects is that it reduces secretions. We tried the first patch on a Sunday morning so we could keep an eye on him for any bad side effects. A few hours after the patch went on, he was very dry, so it did reduce the secretions like the doctor wanted. But he also became very lethargic, and by the time Sunday evening rolled around, his heart rate started dropping, followed by his oxygen levels getting lower than we were comfortable with. We pulled the patch off and he slowly started bouncing back.

The doctor wanted to give the blood pressure med one more try, but this time using the tablet form instead of the transdermal patch. With the tablet we would be able to adjust the dosage by cutting it into smaller pieces. Of course we were a bit nervous about trying the med again, but we trusted the doctor and decided to give it another shot.

The doc wanted us to give James ½ a tablet 3 times a day…morning, afternoon and evening. We decided to start with just the morning and afternoon doses. Even though James is on a pulse ox 24/7, we didn’t want to have an issue in the middle of the night. Even with just two doses, we were a little concerned that first night when his heart rate dipped into the 50s while he was sleeping. Stacy called palliative care and the doc on call said not to worry. His heart rate can get into the 50s overnight and in the 70s during the day. As long as his oxygen saturations don’t drop, he’ll be fine.

Thankfully we had purchased our own pulse ox with money from his medical fund in addition to the pulse ox that is provided through home health. Our pulse ox is not locked down like the one from home health and we are able to adjust the settings on it. We had the alarms set at the same levels as the one from home health, but their heart rate alarm goes off when his heart rate drops below 60. We lowered the alarm a little bit on our pulse ox so that James could dip into the 50s and not set off the alarm throughout the night.

It’s been a week since he’s been on this blood pressure med, and he seems to be doing fine. It has reduced his secretions a bit so we’re not suctioning as much as we had been. This has me a bit curious. I wonder how many other medications are prescribed not for their intended purpose, but for their side effects.

School

Last week James’ class did their end of the year Spring Sing. Stacy took a video of one of the songs they did:

They also had a “field day” with lots of outdoor activities.

And just like that, another school year is over. I like the fact that Stacy takes pictures on the first day of school and again on the last day. It’s cool to be able to look at each picture side-by-side and see how much (or how little) James has changed during the course of the school year.

This year I didn’t notice too many changes between the two pictures, except that he seems to have gained a few teeth. And before you ask, no James didn’t wear the same shirt to school every day. I recall mentioning James’ overabundance of shirts. He has enough shirts to go months without wearing the same shirt twice. Stacy just decided to dress him in the same shirt for the last day of school that he wore for the first day.

Baseball Game

Friday night we went to cheer on our minor league baseball team. A very nice gentleman sitting close to us ran out to the parking lot to chase a foul ball and brought it back for James.

After the game they had a fireworks show which James seemed to really like. He was a bit sleepy towards the end of the game, but once those fireworks started lighting up the sky above us, his eyes got really big.

James and the Chocolate Factory Walk

It’s still a few months away, but if you’re in the Chicagoland area, mark your calendars for September 10th for the James & the Chocolate Factory Walk. “The Elmhurst College Acts of Random Kindness Club, ARK, is hosting this year’s mouth watering hot chocolate walk in September! ARK is an organization committed to using kindness to create a positive impact on campus and beyond, and what better way to make a difference than by eating chocolate! The purpose of this event is to show our support to the Fulkerson family by fundraising for their son’s medical expenses.”

More information about the walk can be found here:

https://www.facebook.com/events/1394476413974064?ref=newsfeed