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!!

 

By Kerissa Lee • October 31, 2026
Dear friends, I just cannot believe it’s been more than 2 months since my last blog post! So much has happened, but most of it is very happy news!! ☺️ I saw my GI surgeon in September for my post-op appointment (check out my previous post if you missed what surgery I had in August). I’m all healed thankfully, although there is now a noticeable crater on my abdomen where my j-tube used to be. :( Scar tissue inside is what’s causing that, and she told me I need to be careful when carrying very heavy things because I could get a hernia in that spot. 😣 If that happened, she said she can easily repair it! I definitely don’t want another surgery, though! Aside from the short 4-day hospital stay I had in August for that abdominal surgery, I’m soo happy to share that the middle of November 2026 marks 2 WHOLE YEARS since I was last admitted to the hospital for a “mito crash!” I could cry from tears of happiness, and all praise and glory truly goes to God!! 🥹 My previous stretch of stable health lasted about 17 months (from September 2021 to February 2023), so I surpassed that which is simply amazing! Because my health has been doing so well, even more incredible news is that I got a part time job!! I found work through care.com since I LOVE babies and kids. I started occasionally taking care of a 6 month old baby girl—she’s so adorable!! I also sometimes take care of a 5 year old girl with her 3 year old brother. For both of those jobs, I’m just the backup (for example, when extended family can’t provide care). But, last week, another mom reached out on care.com asking if I could be her 2 daughters’ afternoon nanny every Monday—the oldest girl is 6 years old, and her little sister is almost 3 years old. It’s been so wonderful and fulfilling to be able to work. I never want to take for granted how much of a gift it is to have a job! 🥲 I do still have to rest my body on the days I don’t work because my muscle spasticity gets soo intense and painful. 😞 It feels like my back muscles just continually clench up and spasm. Very thankful for the muscle relaxant Baclofen which helps the extreme tightness! The chronic pain also worsens in my legs/back, and my hand tremors do, too (called minipolymyoclonus). Regardless of these symptoms, it makes me so happy and thankful to God for the ability to work! 💚 You might have noticed that I haven’t mentioned anything lately about my Pain With Purpose store. There are a bunch of reasons, but one of the biggest is that shipping has become more and more expensive which is a bummer. 😞 For the past year, whenever a customer places an order, I’ve been paying part of the shipping cost out of my own pocket because I wanted to keep the shipping fee low. I’ve also wanted to keep card prices low because I totally understand how expensive everything is in this economy. But in today’s digital world, a really nice card (at Papyrus, for example) could cost more than $9!! So charging only $2.75 for one of my cards on top of keeping the shipping fee low has been a challenge. After thinking about it a lot, I’ve made the decision to close my store—at least, for now! Next year, it’d be super cool to sell my items (cards, stickers, bookmarks, prints, and magnets) at something like a pop-up! 😊 So I will definitely be sure to keep you posted with any new shop updates! If you did place an order this past year, I wanted to say a big Thank You!! It meant so much to me, and I hope my cards were an encouragement. 🥰 I don't know what God has planned for my future regarding my health and everything else, but I just want to have faith and keep leaning on him for strength, through any future highs or lows. The Lord truly is faithful! Thank you so much for praying for me these past 16+ years. ❤️
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.. 
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1