It’s surgery eve. Tomorrow Sean will lose his one-and-only transplanted kidney to cancer. To say we’re anxious would be an understatement. Today we travel to San Fransisco and will settle into the house that will be our home base for the next two weeks. We check at 5:00 am tomorrow at Stanford Medical Center for a 7:30 surgery. The procedure is expected to last 4-5 hours. They've told us he will be inpatient for 5-7 days, and then will stay in the area as an outpatient for a week.
We are so grateful for the generosity of our hosts and everyone who has contributed to the GoFundMe account. We truly feel blessed and loved.
Thank you to everyone who has been praying for us. Please pray for a successful surgery that is free from complications. Pray for his recovery and the long road of dialysis until he can have another transplant. Pray for safety as we travel down there today.
It's been a veeeeerrrryy long morning. The surgery was 4 hours long and went exactly as planned with no complications. The kidney and tumors were removed and he has been declared a great candidate for peritoneal dialysis when he's ready. He should be in the recovery room for a couple hours and then move to a regular room. He will be inpatient for 5-7 days.
We had a bit of disappointment when the doctor told us in the pre-op area that the fistula (placed last Thursday) didn't take. He couldn't hear or feel the blood flow that it should have at this stage. This was particularly hard for Sean as it has caused him quite a lot of pain. During the surgery, however, the surgeon used doppler to listen to the blood flow and thinks there is a chance it will be usable after all. The use of blood thinners during dialysis may help it. The permacath (also placed Thursday) has a flow issue in one port. We would appreciate prayer for both the fistula and the permacath to do what he needs them to do, and for his recovery.
We're all tired and emotional and anxious to see him. Thank you for all your prayer and support.
Sean is settled in his regular room in the new Stanford hospital. It's a beautiful facility. He's still having a lot of pain and we're working to get it under control. He is about to have his first round of dialysis, which will be done in his room until he's discharged.
Please pray for pain control and for dialysis to go well as that has become his new lifeline.
Sean continues to do well and is currently watching a movie and dozing while having his second round of dialysis. Pain control is much better, although they will most likely get him up later today, which won't be a lot of fun for him.
Today we're thankful for less pain, removal of the NG tube, and a GREAT dialysis nurse who is full of helpful information.
Today we had a hiccup. The catheter used for dialysis isn't flowing well and today's treatment had to be cut short. The catheter is going to need to be changed. They are planning some vascular imaging and more dialysis over the weekend, then catheter change on Monday. After that, he should be discharged and coming in as an outpatient for about a week before coming home to Reno.
In more positive news, he continues to feel better with pain under good control. He hasn't had anything more than Tylenol all day. He has been walking laps around the unit and sitting up in a chair much of the day. He progressed to a clear liquid diet and should get some real food soon.
Please pray for the catheter situation to resolve easily and for successful dialysis over the weekend.
It's been a pretty good day. Dialysis went better this morning and he was able to start eating normal food (he enjoyed a turkey burger for dinner and snacked on jellybeans). He's walking more and has been sitting up watching football all afternoon. We're still waiting on the timeline for vascular imaging and catheter replacement, and spending time reading and discussing how to handle his new diet guidelines. It can feel overwhelming, but we're positive we can handle it.
Today was a day of rest, and walks, and football (Go Green Bay)! Tomorrow we face a new challenge. The dialysis catheter that hasn't been working well will be replaced. It should be relatively easy and the plan is that he will be discharged after dialysis later in the day. We will be staying in San Francisco at an Airbnb owned by family and coming back to Stanford for dialysis and follow up appointments through the week. We hope to go home to Reno on Friday.
Sean's wife Natalie has been so amazing through all of this. This picture is the two of them on one of his walks today.
Today was an eventful day. Sean's catheter was replaced under sedation and the procedure went very well. He has had some pain at the site, but not too much. The big news is, he was discharged today! We are currently at the house in San Francisco and he is settled in for the night. All the movement to the car, the drive, and into the house caused him quite a bit of pain. Tomorrow we have to be back at Stanford for dialysis at 8:30 am. Please pray for the travel there and back to be as painless as possible. We're thankful that we'll have a day off to rest on Wednesday.
Today dialysis kicked butt. Sean's butt. He's had four daily treatments beginning the day of surgery and then two days off. Because of the two day gap, the dialysis was faster flow, longer time, and took off more total fluid than before. The side effects of this fluid drop are dizziness, nausea, and muscle tingling/cramps. Today he had all those symptoms for a solid seven hours. We know that he'll get used to this. We know that this is a great reason to stick with fluid limits so there will be less fluid to take off (although they haven't exactly given us limits, yet). We spent a couple hours reading labels at the grocery store, trying to figure out what he can eat.
We know this will get better, but today was hard.
Tomorrow we have a day off. We'll go to bed early and sleep late. We'll take some walks and continue trying to figure out this diet thing. Tomorrow will be a good day.
Sean had a hiccup today. He has been feeling pretty tired and sore after the Peritoneal Dialysis (PD) catheter placement on Thursday. This morning he started running a fever, so he went to the ER and was admitted to the hospital. He's had blood tests, a CT scan of his abdomen, and two rounds of different antibiotics. Because of the contrast medium used for the CT scan, he'll likely need dialysis before he can go home.
We hope this is just a small setback and he'll be able to go home tomorrow to continue healing and transitioning to PD.
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Sean's story began when he was 14 months old and diagnosed with kidney disease. After many remissions and relapses, at 8 years old his kidneys began to fail and he had a transplant. His transplanted kidney has served him well for nearly 27 years.
In July 2019, a tumor was discovered on his one and only kidney. It was found to be cancer and his kidney needs to be removed. Surgery is scheduled for Wednesday, January 8, 2020. He will likely be on dialysis for 2-5 years before he can receive another transplant.
This Caring Bridge journal will be updated regularly to keep our family and friends informed about his journey.
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