After a week filled with ups and downs following his discharge from the hospital, Jonathan is beginning to adjust to life at home.
Jonathan and James
Jonathan’s doctor recommended that he remain active by moving around and walking. Jonathan really enjoys walking and so has started going on long walks. He’s found that walking is a great way to ease the tightness in his left calf.
This weekend he walked a mile both on Saturday and on Sunday. Thankfully the weather cooperated and he had lovely weather both days.
This afternoon, James and I joined Jonathan on his afternoon constitutional. Hooray for walking buddies!
While he still continues to struggle with catheter management, Jonathan’s bladder is feeling much better now that he’s taking Oxybutynin. So that’s good news as well.
Let’s hope things continue to improve this week as well!
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.
Jonathan relaxing at home and elevating his left ankle, while dog Sunny snuggles in close
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.
I’m happy to report that Jonathan was discharged from the hospital late this afternoon. He is now home safe and sound and is relaxing with his family.
Earlier today, Jonathan had a second session with the ileostomy nurse Sunny. After that session, Jonathan felt comfortable that he could manage and change the ileostomy on his own.
That hurdle cleared, Jonathan was given the green light by Dr Liu to go home. The nurses removed his JP drain, showed him how to manage the catheter, and finalized the discharge process.
It was a busy day of learning today in Jonathan’s hospital room.
He had visits from various medical professionals, who are all focused on sharing key information that he will need once discharged from the hospital.
The first visit was from a physical therapist (who also happens to live nearby in Jonathan’s neighborhood). She transitioned Jonathan from a walker to a cane and showed him how to walk up and down stairs properly. Jonathan was very happy to get out of his hospital bed and walk around the hospital wing.
At the end of her visit, she officially graduated Jonathan from physical therapy and he’s now considered independent. He’s now walking circles around the floor on his own. Yay!
The second visit was from an ostomy nurse named Sunny. I stepped out of the room for that particular visit, but Jonathan tells me that Sunny was super informative and a great teacher. Jonathan learned a lot about caring for his ileostomy and is feeling more confident about managing it on his own.
The third visit was from a dietician named Lisa. Jonathan needs to follow a strict low fiber diet for six weeks following his discharge until the swelling from his ileostomy goes down. He also learned about how foods impact the output in his ostemy bag, and how and when to make dietary changes.
In summary: soft foods = good! Popcorn and seeds = bad!
He will also get a visit at some point today from the pharmacy team who will show him how to administer shots (he’ll need to do this for 4 weeks). Jonathan is already a pro at this, thanks to the Nivestym shots that he had to administer during chemo.
The doctor thinks Jonathan might be able to go home as early as tomorrow, but we’ll find out in the morning.
The one negative about today is that Jonathan received a new roommate in the middle of the night. The new roommate is very nice, but has a lot of medical professionals and family members coming to visit him, so it hasn’t been very relaxing and it’s impacted Jonathan’s ability to sleep.
The medical staff is trying to get Jonathan transferred to a private room, so fingers crossed!
All in all a good day. Jonathan is making great progress and we are eager to get him settled in at home.
As Jonathan wrote in his blog post earlier today, his recovery is going well. His surgeon, Dr Liu, visited yesterday to touch base. Dr Liu examined the incision and the ostomy bag and reported that everything looks fine so far. The bloodwork and other test results look good. So that’s encouraging.
A visit from Dorje
While the first 24 hours after surgery were a little challenging, Jonathan is doing much better today. His fever is gone, he’s no longer connected to the IV, and he’s graduated from a liquid diet to a low fiber diet which includes solid foods. He also slept much better last night and woke up feeling energized today.
Jonathan’s first time walking with the walker, sporting a fancy new robe (thanks Sarabeth!)
Yesterday we also got to meet Jonathan’s physical therapist. She showed Jonathan how to sit up using a “log roll” motion which avoids putting pressure on the incision. He walked around the floor of the medical wing twice using a walker. The physical therapist showed Jonathan stretches to help ease the pain in his calf.
His calf remains sore but is better today. How did Jonathan end up with a painfully sore calf after a surgery on his rectum, you might ask? The medical staff believe it is due to how he was positioned during the procedure. After running some tests, they believe it’s essentially a really bad charlie horse.
Thank you for the lovely flowers Aunt Donna, Cathey, Earl, Wolf & Kacie!
Today was a relatively quiet one. His roommate was discharged yesterday so Jonathan had the room to himself and got to look out the window. He’s enjoyed a few visits from family and friends and a special flower delivery. He’s gone on more walks around the floor and listened to an audiobook. He’s getting used to the reality of having an ostomy bag and beginning to learn how to care for it.
Tomorrow is a big day. We are expecting visits from the surgeon, the ostomy team, the urologist and the physical therapist. These folks will all assess Jonathan’s progress and ensure he is ready to handle life at home. Once they give the all-clear, then he will be ready for discharge.
So… fingers crossed he’ll get to come home soon!
Thank you all for the well wishes, love and support.
Jonathan is now out of surgery and doing fine in a room at the hospital. The good news is that the surgical team successfully removed the section of his rectum with the tumor and installed the ileostomy. The bad news is that they accidentally nicked a hole in his bladder in the process.
It turns out that the radiation treatment weakened the tissue separating Jonathan’s rectum and bladder. So, it was more fragile than anticipated. The hole has now been stitched up but it means that Jonathan now needs to heal from the bladder injury as well as the LAR surgery and ileostomy.
The initial plan was for Jonathan to have a catheter for only 1-2 days; however, now they want him to have it in for 2 weeks. So he’ll go home with the catheter. He’ll need to come back in a couple of weeks to get his bladder checked before they’ll confirm if it can be removed.
Jonathan is in good spirits about the bladder injury as he recognizes that these things happen sometimes.
During the surgery recovery period, Jonathan experienced a lot of pain in his left calf. He said it felt like the world’s worst charlie horse, or a “charlie demon stallion” to quote Jonathan when he was on a lot of pain meds.
Later in the evening, he developed a fever of 99.9 which caused a bit of concern from the nursing staff. They were worried he might develop sepsis which can be quite dangerous.
Suddenly, Jonathan’s room was full of medical staff running various tests – from an X-ray to blood and urine tests to an EKG. It was all a bit overwhelming and stressful. The staff is monitoring the situation and they gave Jonathan some medicine to help him feel calm.
When I left for the evening, Jonathan was feeling calmer. We are now waiting on the results of the blood and urine samples to see if he has an infection.
Just a quick note to let y’all know that Jonathan is still in surgery. I’ve been getting periodic phone calls throughout the day from the surgery team to touch base. So far, so good.
So, for now, we continue to wait.
In the pre-op room this morning before surgeryJonathan in the pre-op room with a warming air blanket
I’m in the surgery waiting room, which is a comfortable space with a nice view with a few other families. We’ve been nervously chatting and comparing notes about how long we anticipate being here today.
Today I’m keeping myself occupied by listening to an audiobook and knitting… and keeping my phone close at hand so I don’t miss a phone call. Earlier today, I missed a call from the surgery team due to a fire alarm which caused this wing of the building to be evacuated. Luckily, the incident didn’t impact the wing where Jonathan’s surgery is taking place and the alarm didn’t last very long. Now I have the volume of my ringer turned on high and I’ve got my phone in my hands so I don’t miss another call.
Will post another update when I have news to share!
Hi! My name is Katy and I’m Jonathan’s sister. It is 5:30 am here in Seattle. We just arrived for Jonathan’s surgery at the UW Medical Center. The hospital is pretty quiet at this time of day, except for here at the admitting clinic which is bustling with patients and their family members.
I drove to Seattle yesterday from my home in Eugene, Oregon. I’m an alumna from the University of Washington, so I’m familiar with the campus. I’m grateful that Jonathan lives so close to the hospital and we only had a 12-minute drive this morning.
Jonathan is all checked in and resting comfortably under a heated blanket while we wait for the surgery to begin.
I’ll be sharing updates here as I learn more information about how the surgery is progressing.
Stay tuned!
On the walk from the parking garage to the UW Medical Center
foiblish 