Another bump in the road

Kerissa Lee • August 18, 2023

"The Lord is near to all who call on him."

-Psalm 145:18

Dear friends,

I would really appreciate your prayers yet again with this latest turn of events.

To recap, in February, I had sepsis from a central line infection. A PICC line was placed because my Hickman central line had to be surgically removed due to the infection. I had that PICC until April 4th, the day of my port surgery. About a week later, my port incision severely reacted to the dermabond (surgical glue), so the doctors advised I use strong antibiotic/steroid ointment over the site, stop using my port, and get PICC line #2. About a month later, my port site was healed well enough to get my PICC line pulled and my port re-accessed. Things were going great port-wise for about 2 months (I bet you can guess where this is going.. 😩).

But then, several weeks ago, my site developed a small welt/rash, so I was de-accessing a day early each week to put a bunch of Benadryl gel, cream, and Active Skin Repair on it. Last week, the home health nurse couldn’t access my port and get it to flush/draw blood (this has never happened before). It took 4 pokes to get the Huber needle in the right place. We’re not sure if it’s because of that (plus the hot weather temps and/or a mast cell activation flare-up), but my skin has gotten much worse and not better as time goes on. I’m not sleeping well because it itches SO much, and I’m scratching all day, every day, wanting to rip out my port needle. 😭

De-accessing one day a week to put a bunch of cream on has not been enough time to let my skin heal, so my GI specialist has decided it’s best to get PICC line #3 temporarily placed. And I’m so bummed and sad about that, especially because my arms don’t tolerate PICC lines well—I have scarring all over my upper arms from reacting to the PICC tape. 😔 Could you please pray that my port site will heal completely and that my arm won’t itch terribly? My GI dr. marked this as “urgent” so it’s scheduled for this Sunday at 8:15 in the morning.

I sure wish I could have a break from all this. But, even though it’s so very hard living with a mitochondrial disease and needing chronic IV access, I know with every setback and bump in the road that God is faithful and sovereign. ❤️

I love this little hymn by John Newton which I just read in my devotional last night—a “God wink” so to speak. 😉 It’s a perfect reminder that the Lord always sees me through these trials. 🩵

“His love in time past forbids me to think

He’ll leave me at last in trouble to sink;

Each sweet Ebenezer I have in review

Confirms His good pleasure to help me quite through.”

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Surgery Update 😊

By Kerissa Lee • August 21, 2026

Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! 💚 All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! 🥹 My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! 🥰 I can’t wait until I can show you his face—he’s so adorable. 🩵 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it..

August 6th Surgery Prayer Requests 💚

By Kerissa Lee • August 6, 2026

"God is our refuge and strength, a very present help in trouble." -Psalm 46:1

Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul