Another trip to the ER…..

Kerissa • August 14, 2014

Suffice it to say, I am “ER-ed” out…..I just can’t stay away! jk😉

But first, let me rewind a little bit:

On Thursday, Aug. 7th, I had surgery for a jejunostomy feeding tube placement.  Thankfully, everything went well, but there were still some complications and setbacks.

1. After surgery, my heart rate was way “too high,” as the nurses put it.

2. I had a low grade fever, something the team monitored closely in case it turned into Malignant Hyperthermia (which I’m susceptible to based on genetic testing).

3. I had to spend several long hours in the PACU (post-anesthesia care unit) because of breathing problems which continually set the alarm off.  The team ended up having to use my CPAP machine.

4. I had almost a whole LITER of fluid in my bladder!  The doctor was astounded!  I couldn’t empty it on my own (because I have a neurogenic bladder), so they ended up having to place a Foley catheter—such a painful procedure! x[

5. During surgery, they wanted to place an arterial line in my arm to continually monitor blood gases….my blood work got so out of whack.

6. Over the course of this hospital stay, I had to be given 6 liters of IV fluids because my potassium kept dropping very low!

7. The dr. said I bled a lot during the surgery, even though this was laparoscopic (minimally-invasive).

Anyways, I got home from the hospital Saturday evening!  I was sent home with a long list of medications to take, including some stronger pain meds because having CRPS makes my nervous system more sensitive than normal.

Monday night, I noticed the J-tube site was bleeding a little bit, but I just tucked some gauze near the area and went to bed.  Well, at 1:30 in the morning, I woke up to wet blood on my sheets and pajamas.  I groaned, knowing where this was going to lead me.  My mom called the GI surgery resident on-call, and he said to go to the ER if I was bleeding at the central part of the J-tube.  So to the ER we went!  As you can imagine, this was unwelcome—here I was sleeping peacefully!😉

When I arrived at the OHSU ER, they got me right in and even put me in the pediatric side (Doernbecher’s) so that I wouldn’t have to wait at all.  It’s a bad sign when the emergency dr. knows you and is familiar with your case..😉

The nurses were concerned about all the blood.  The dr. quickly called Surgery to come.  What followed was very unpleasant and so painful!  The dr. washed and cleaned the area aggressively to try and see where the bleeding was coming from.  She had to use scissors to remove thick blood clots….that part wasn’t nice to watch.😉  The bleeding still kept coming, so she eventually had to suture the place up again.  Thankfully, that did the trick!

I have a follow-up with Surgery on Friday.  They’re going to remove these things at the J-tube site called bolsters (which are currently anchoring my small intestine to the wall of my abdomen).  And in a few weeks, I get to have the tube changed to a “low-profile button.”🙂

Today I started feeds at a very slow rate.  Here are a couple pics:

I receive high-calorie formula through the feeding tube.🙂
By Kerissa Lee January 21, 2025
Hi, friends, First off, the piece of art above was hand lettered by me last year before all “this” happened. I’m sad to say that I only have 3 or 4 pieces left to share until I run out.. 😢 I went to see my neuromuscular neurologist in Seattle on January 8th. My neck weakness continues to progress which has been so scary. He said I need to get a neck MRI and some specific blood tests to check for polymyositis. If it is normal, though, his opinion is that this is mitochondrial disease progression. 😔 I haven’t seen my mitochondrial specialist in San Diego in more than 3 years (I started seeing him in 2014!), so I’m sadly no longer considered his patient. The neurologist sent a new referral to him, but I’m not sure if it will be accepted.. He’s almost 80 years old (one of the pioneers of “mitochondrial medicine”). And I don’t know if he’s cutting back on “new” patients.. Even if he did accept my case again, I’m currently not physically well enough to fly down from Oregon.. 😞 My quality of life continues to worsen ever since this unusual neck weakness started this past October. I know I’ve said this before, but I truly miss doing all of my favorite things (like hand lettering art) or even simple tasks (setting up my own IV infusions, vacuuming, washing hair, etc.). 🥺 Before October, I was even starting to drive to physical therapy or the grocery store. Yes, I’m 32 and still don’t have my driver’s license due to being preoccupied fighting mitochondrial disease for almost 15 years now. I never shared the exciting news that I was able to get my driver’s permit over 2 years ago, and it was so fun to drive myself to appointments close to home. Now, I can’t do any of the above which has been difficult to process. I shed tears every now and then just thinking about all that has changed. 😢 I’m having to go to bed around 6:30 PM to lie down and rest my neck. But I’m so uncomfortable from the pain, and I don’t fall asleep until after 3 AM every night. So my pain dr. referred me to palliative care. 😢I know it’s not hospice, but I’m still sad we’re at the point where I even need palliative care. Unfortunately, they’re most likely going to deny the referral (if they haven’t already) because we were told they only see cancer or heart transplant patients. I even checked if there’s palliative outside of OHSU, but they, too, see only oncology. It’s so hard that cancer gets a lot of funding, research, and support, and those with rare diseases are left “on their own.” It’s isolating and lonely. 🥺 I saw my PCP again, and he is just the best and full of compassion. ❤️ He placed the neck MRI as urgent and also ordered more labs to keep pursuing answers since all this is such an atypical picture if it was mito progression.. In case palliative turns my case down, my dr. told me that the internal medicine clinic has a complex and chronic pain management clinic (different from the pain center that I’ve been going to since 2011). He referred me to them to try and help me get more comfortable. I have a wonderful team of doctors and an amazing naturopath, but I’m even going to see a functional medicine doctor for the first time on the 23rd. Praying he could maybe have some additional insight on everything and will offer some fresh ideas for treatment as well.. I also have an appointment with the metabolic geneticist on the 28th.. I’ve read through the Bible more than once, but it’s amazing how the Lord points us to specific verses at just the right time. I don’t know about you, but sometimes I think, “I don’t remember reading this before!” Paul David Tripp’s newest devotional Everyday Gospel has been so very encouraging. He shared 2 verses from the book of Genesis where Jacob said that God “answers me in the day of my distress and has been with me wherever I have gone” (35:3). Several chapters later, Jacob also said that God “has been my shepherd all my life long to this day” (48:15). When I read that, I felt such peace. God spoke to my heart to remind me that He is with me and for me….in every circumstance no matter how hard. ❤️ Could you please pray that I can have the MRI completed this month and not have to wait many weeks? Pray that all of my doctors will have wisdom as my case is so complex. Lastly, could you pray that I will persevere and keep walking by faith? I feel so weary, not only physically but also mentally and spiritually. 😥 Thank you so much for praying for me all these years. ❤️
By Kerissa Lee December 13, 2024
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
By Kerissa Lee November 9, 2024
“Be still, and know that I am God.” -Psalm 46:10 
Share by: