Hello Jonathan’s Fan Club!

It’s been 5 days since Jonathan was discharged from the hospital so I figured it was time for an update.

Jonathan has enjoyed being back at home with his family and in familiar surroundings. It’s a relief to wear regular clothes again and to feel some measure of normalcy return.

That being said, being back at home has also been a challenging transition filled with ups and downs.

First, the good news: his ileostomy looks great and it is healing well. Jonathan received excellent training on how to care for the ostomy from the nursing staff and he feels confident he can manage it on his own. He had a follow-up appointment yesterday with the ostomy nurse and so far so good. The ostomy needs to be completely changed every 3 days and he’ll be doing the next one on his own.

Thankfully that part of the recovery is going well because he’s dealing with some challenges that he didn’t anticipate prior to the surgery.

Since Jonathan’s bladder was nicked during the procedure, he has to wear a catheter at home for two weeks. That has been a challenge, especially because he didn’t receive adequate education in the hospital on how to deal with a catheter at home. Jonathan has been slowly getting the hang of it, but it’s been a frustrating process and a lot more work than we anticipated.

Jonathan also continues to experience pain in his left calf occasionally, along with some swelling in his ankle which we suspect might be edema. A PA checked out the leg yesterday morning, who recommended another ultrasound to rule out Deep Vein Thrombosis (DVT). He had the ultrasound yesterday afternoon and there is no sign of a blood clot so that’s good news.

We are somewhat mystified as to why the pain has returned because his calf felt pretty much back to normal when he was discharged. So we are keeping an eye on it and monitoring the situation. He’s walking a lot which is helping to relieve the pain.

And now onto the third challenge: Jonathan was accidentally prescribed medication with an enteric coating. Ileostomy patients are supposed to avoid this kind of medicine because it can pass through without being absorbed into the system – and even block the stoma.

Jonathan discovered the error when he noticed that no output was flowing into his stoma bag and then found an entire pill in there. The medicine, Oxybutynin, was prescribed by the urology staff to help reduce pain and bladder spasms due to the emergency bladder surgery.

He stopped taking the medicine right away and got the prescription changed to a quick dissolve formula. However, we missed the notification that the prescription was in at the pharmacy and honestly lost track of it during yesterday’s medical appointments on his calf and ostomy.

Unfortunately, Jonathan had a lot of bladder discomfort last night – which reminded us to follow up on getting the new prescription. We picked it up from the pharmacy first thing this morning, and hopefully he’ll start feeling relief soon.

Jonathan has a couple of follow-up appointments next week, including one with the urology staff. Hopefully they’ll give him the all-clear on his bladder and remove the catheter so it’s one less hassle to deal with.

Big thanks to both Sarabeth and Jen who have been a huge help this week, along with family and friends who continue to provide love and support.

Xoxo,
Katy