Long overdue update regarding surgery

Kerissa • December 6, 2017

“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow.  Why?  To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink

Hey friends,

I’m so sorry that I haven’t blogged since October!! November was a pretty busy month with Thanksgiving and other things going on, and I was waiting and waiting to hear “the plan” from my surgeon..

Well, I finally heard confirmation from my surgeon, and the big news is, my major bladder/abdominal surgery has been postponed!  I wrote in my previous blog post that my surgery date was scheduled for December 13th.  Long story short, at the beginning of November, my surgeon told me how she wants my prealbumin level to be above 20 so that I heal well after such a big surgery.  It was hanging around 18-20, so my GI dr. added an additional 10 more grams of IV protein to my daily TPN (I now receive 54 grams total of IV protein per day).  A few days after that change was made to my TPN, I had my regular weekly blood draw, and we found out that my prealbumin level dropped down to 15 (which is pretty low as the “normal” range goes up to 32).  We were all confused, so my GI dr. said he might need to look into things if my level continues to stay low.  The following week, I had the level drawn again, and it didn’t move a budge! My GI dr. told us several reasons that cause prealbumin to drop….namely, inflammation, infection, malnutrition, kidney issues, etc.  But none of those things seemed to be going on..

Well, at the end of that week, I started feeling a little “off” with a low grade fever.  Then, more and more things started going on like no appetite, weight loss, nystagmus, more fevers, and I almost threw up during the middle of the night this past weekend.

And still, my prealbumin continues to remain low.  Something seems to be brewing, and we’re not sure what….whether it’s a “mito crash” or the start of a central line blood infection.  So my surgeon agrees that we shouldn’t have the surgery right now because I need to be as healthiest as possible and this prealbumin level NEEDS to go up!  She does want to see me again for a follow-up to discuss the new plan going forward..

In the middle of November, I had my 6th sleep study to adjust the levels for my new adaptive servo ventilator for my bad central sleep apnea.  Right now, I’m using a loaner machine, waiting to get my own new device as soon as insurance approves it..

I still need to get used to this ventilator….it’s weird….if I hold my breath, the machine “breathes” for me! :O

On top of all that has happened lately, I also had to make an unexpected trip to the ER last week because my jejunostomy feeding tube accidentally got pulled out completely! :’(  And it was so extremely painful to try and insert back in..  I was upset that this happened a second time, and I just hate to think that this may happen a third time….even though I try to prevent these things from occurring by using a feeding tube clip on my shirt.

But, I’m continuing to take it one day at a time, knowing that God gives His unending grace to me for each hard day..  He is so faithful and patient and kind to me.

If I don’t blog again until after Christmas, I hope all of you have a very special Christmas with your families!!

 

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