Sepsis….a second time. And news on baby Charlie Gard.

Kerissa • July 15, 2017

Hi friends,

Wow!! So much has happened, but I will just go right in and try to tell you everything..

The last week of June, I started feeling very off with episodes of nausea and severe head pain (not my “normal”) all over….it even hurt to move my eyes. So on Tuesday the 27th, I decided to check my temperature. It was 100.9 degrees…I thought that was weird and wondered if it was registering correctly. The next day, my nurse came over for my weekly blood draw and port needle/dressing site change. She checked my vitals like she always does. If I remember correctly, my temp showed that it was 101.8 with her temporal thermometer. So to make sure, she checked my temp again but this time with her tympanic (ear) thermometer. It registered as 102.1. She was not expecting that. She even checked my temp again with my own thermometer, and it was 102.4. I told her everything and how I was feeling terrible, so she called the nurse on-call at my GI doctor’s office. Because the clinic was almost closing by that time, my GI dr. recommended that I go to the ER in case I had an infection from my port.

I really didn’t want to go as I had 2 ER visits (see previous post) already that month alone! But because I was feeling so bad, we agreed to head back to the ER. I beat my record for most ER visits in a month! haha Just to double-check once again, I checked my temp right before my mom and I left the house, and it was 102.7.

Thankfully, there was hardly any wait time when we arrived. I had several tubes of blood drawn, and the doctors also ordered a chest x-ray and urinalysis to rule out a bladder infection. The x-ray and urine tests were completely normal, so the doctor prepared me with the news that I would most likely be admitted as blood cultures take up to 48 hours (or longer) to grow.

Sadly, the hospital had no rooms available, so my first night there was spent in the ER. I was hooked up to monitors because I had a very high heart rate. I also had lots of IV fluids running. I was very sleepy and felt so sick from whatever was going on. The hospital medicine dr. who came to the ER to consult said I was septic…. I couldn’t believe that my port got infected after only 5 months!

It got placed in January….and we now know that a port is not the best kind of vein access for me because I have to get accessed every single day for my IV infusions….this meant that the port needle had to stay in my chest all the time which is a higher risk for infection, even though the needle did get changed once a week. You may think, “Doesn’t a regular central line stay in all the time, too?” Yes, it does, but it’s not pulled out and a new one isn’t inserted every week like a port needle…each time a port needle is inserted, there’s a higher chance for bacteria to get inside…hope that makes sense. :/ Usually, patients with ports aren’t accessed every day…they may use it a few days in a week, but then the needle gets removed for a little while afterwards and is not used at all.

But back to the story.. The doctors now were just waiting for the cultures to grow to see what kind of bacteria this was. And before even 48 hours went by, my blood cultures from my port started growing Staphylococcus Epidermidis. Even my blood directly grew this bacteria which was not good at all.

At around 6 AM, I was moved to a room on 14A, and I was so grateful that it was a private one! It even had a beautiful view (see picture above)!

The infectious disease team started caring for me in addition to the hospitalists….they put me on 2 very aggressive IV antibiotics. Early each morning around 3:30-5:30 AM, I had to get poked for blood work. IV therapy also had to place IVs in both of my arms because the IV antibiotics (along with my regular IV nutrition and magnesium) were so hard on my veins. It was extremely painful to infuse such strong medications in my small veins.

On Monday (7/3), the infectious disease specialist called my GI dr. to see if there was any way I could get off TPN and just do tube feeds, but my GI dr. explained how I couldn’t stop it at all because I need the nutrition, IV fluids, and magnesium.

Even while I was inpatient, the doctors ordered something called a “calorie count” to see how many calories I eat orally in a day. They figured out that I eat around 500 calories on average per day, and I would need to eat much more than twice that to not need TPN.

At first, Infectious Disease wanted to try and save my port (i.e., not remove it) because needing to remove and replace ports/lines means less and less vein access down the road due to scar tissue, but after consulting with my GI dr. and the hospitalists, they all agreed that it was best to remove it and place a new central line.

I had surgery that afternoon to remove my port. It turned out to be the right decision after all—they cultured the port catheter tip, and it still came back positive for S. Epidermidis, even though I continued to be on the strong IV antibiotics. The port surgery was rough as I had to be awake for it. My surgeon took a picture of my chest incision, and I would share it here, but it’s graphic. haha

Long story short, I was in the hospital for a total of 9 days. I had surgery #16 on 7/5 to place a new Hickman central line. I love my new line! And I pray it lasts much longer than 5 months.

This is the second time I’ve had sepsis due to a central line-associated bloodstream infection (Staphylococcus Capitis grew in my blood last year), and I wonder if it will happen once a year from now on.. My doctors said it’s not a matter of “if” but “when” it will get infected again. But I’m comforted as I know the Lord is with me every single day….my life is in His hands. And I trust Him with my future.

I got discharged on 7/6, and I’m still doing a long routine of IV antibiotics 3x a day. It’s so rough, and I’ve been experiencing bad vertigo as a side effect of the antibiotic. I have to wake up at midnight each day, start the antibiotic infusion, then wake up again at 1 AM to stop the infusion. Then I have to wake up at 8 AM and do the whole routine again. At 4 PM, I once again start the antibiotics, stop them one hour later, etc. I can’t wait to be finished!!

I’m so thankful I didn’t have doctor appointments this week as our upstairs bathrooms are getting remodeled (it’s so very loud, and I don’t get my normal rest) on top of all this. Next week, I do see my physical medicine dr. and my GI specialist..

Here are a few photos of my hospital stay. I already shared some on FB, but I’ll post them here as well for those who haven’t seen them. Thank you for reading this super long post! And thank you so much for praying for me.

P.S. I’m so thankful that the courts are now allowing Dr. Hirano(an expert in mitochondrial disease who practices in New York….I met him last year at the UMDF symposium, and he looked at one of my test results..) to see and evaluate baby Charlie Gard in the U.K. This story keeps on hitting so close to home because I have a mitochondrial DNA depletion syndrome like baby Charlie (I have a different type, tho). Feel free to read these links that I highlighted to learn more about this precious baby. Continuing to pray for little 11-month old Charlie and his parents! #iamcharliegard #charliesfight

taking a short walk for the first time this hospital admission

my mom and dad surprised me with balloons and a treat!

a therapy dog came to visit me, and it was so much fun!

my IV and tube feeding pumps.

feeling sore after having my new central line placed.

this is what my IV antibiotic looks like! lol

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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

The end of an era ❤️

By Kerissa Lee • July 16, 2026

Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. 🥺 After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. 🥹 You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! 😢😔 Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! 🥹💙 On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! 🥰 So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. 🥹 After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! 🥹

June update (with happy news!)

By Kerissa Lee • June 17, 2026

Hello, friends, I just wanted to share a blog update and thank you all so much for your prayers these last several weeks. ❤️ They help me to persevere! I previously posted that the interventional radiology team said my old port needs to be removed because of the site being too exposed from skin breakdown. Well, on May 19th, I had a virtual appointment with the IR nurse practitioner. To my great disappointment, she didn’t want me to get a new port and said I need a central line instead. I tried explaining to her that all my previous central lines always got infected and caused sepsis, but she still wouldn’t budge. 😞 I left that appointment and cried. I kept reciting Romans 8:28 (“And we know that for those who love God all things work together for good, for those who are called according to his purpose”). I knew that God was in control, but I was still so sad.. The next day was my port removal surgery and central line placement. Many of you already know this from FB/IG, but I wanted to re-share the following here on my blog as well! When I met the attending physician who was going to do the surgery, I told him my whole story and asked if he could please consider placing a new port instead of a central line. And do you want to hear something soo amazing?! He nonchalantly said, “I can place a port!” I was so shocked! 🥹 I immediately felt God’s mercy and kindness in sovereignly arranging this specific doctor to be the one to care for me. Both surgeries were back to back, and everything was much more difficult than he was expecting! In his chart notes, he stated that it took “more than twice the usual time, an unusually large amount of materials, and required a very high level of technical expertise and skill.” It was a great challenge removing my old port because of scar tissue and because it was so embedded to my chest wall. 😥 He had to yank, pull, and manipulate a ton—all of that caused a huge bruise to form over my chest. When he used fluoroscopy (moving x-ray), he also saw on x-ray that there’s a 7 mm cylindrical foreign body in my chest (pictured below). He assumes it’s a retained port fragment from an old port surgery that happened years ago. We’re just going to leave it there.. 😟 I was awake the whole time because none of the sedation meds worked! I’ve unfortunately had more than 20+ surgeries/procedures, so my body has become immune to certain sedation meds. The team recommends that I have much stronger anesthesia next time.. So thankful that the Lord helped me through this painful process! In other news, I finally get to have this temporary, bulky j-tube replaced with a low-profile one on the 23rd! My GI surgeon was hoping that the temporary tube would give the site a break and help heal all the inflammation (which was caused by buried bumper syndrome when the balloon got stuck in the abdominal wall 2 months ago). And I think that did the trick because the site is no longer leaking a ton! 🥲 Praying that switching back to the low-profile tube doesn’t cause an uptick in pain/leaking.. Last week, I had a bit of a scare when blood started coming out of the j-tube stoma (hole) for several days. We don’t exactly know what caused the bleeding, but thankfully, it stopped! If it does happen again, the GI nurse practitioner ordered an abdominal ultrasound.. If you made it this far, I’d so appreciate continued prayers for my sleep. Still experiencing bad insomnia as a side effect from an important medication that I need. It’s so hard when I can’t fall asleep until after 5:30-6:30 AM every single day. 😔 I don’t know what else to do except take each day as it comes and lean on the Lord for endurance. 💚 Aside from this, still so grateful to God that I’m doing really well mitochondrial-wise! For those who may not remember, my naturopathic doctor at the OHSU pain center started me on 2 very strong antioxidants last year: liposomal glutathione and n-acetyl cysteine. When I started taking both regularly for several months, the neck weakness resolved and the overall muscle fatigue improved a lot. By God’s grace, I’ve physically been very stable which is a huge answer to prayer!! 🥹 P.S. It’s taken me a while to share this, but a few months ago, I added 11 new card designs to my shop. Here are some of my faves. ☺️ I’ve sadly run into another unfortunate predicament with the e-commerce site I sell on, but I’ll try to share that story another time.. 😕