It’s been awhile since I’ve published a post, so I wanted to post specifically on Kylan’s health and share some other health updates.

On November 25th I flushed Kylan’s picc line before I connected his medicine and it flushed fine. I connected the meds and he went to his bedroom with his IV pole and worked on some homework. About 30 minutes had passed so I stuck my head in his door and noticed that the bag appeared just as full as it was when I started the IV. As I walked into his room for a closer look, I realized it wasn’t dripping at all. I grabbed some gloves, disconnected the line, and repositioned his arm. We have made sooo many trips to the ER just to have them tell us how his arm just needed to be repositioned or that the line was kinked, so I made sure to do everything I knew to do. Even after he had moved around, the line wouldn’t flush at all. I waited a few minutes and tried again. Still no luck. We had made it so long without having to go to the hospital, but that night Jordan ended up having to take him.

The nurses tried flushing the line and didn’t have any luck. They tried to give him a medication through his picc line to break up the clot, but they didn’t think any of it went through the line so they admitted him that night. The plan was to have the picc line removed and reinserted into his other arm the next morning. He originally had the picc line in his other arm and we had such a difficult time with it. We were in the emergency room several times a week due to issues with the line itself so my mama instincts didn’t think that it was a good idea to move it back to his right arm, but the nurses and doctors know much more than I do and the decision was ultimately theirs to make. In the meantime they had started an IV in his hand so he could still be given his 4am dose of antibiotics.

The next morning I got Klara and Koby ready and dropped them off at school. I headed to the hospital to stay with Kylan while Jordan went to work. As soon as I walked in the hopsital room I saw some familiar faces. The same two guys that have inserted Kylan’s IV’s in the past with their ultrasound machine were standing beside his bed.

Apparently the smallest bit of medicine they had sent through his picc line the night before had broken up the clot and they were able to flush it! The nurse referred to it as, “pretty miraculous,” because she was told that they didn’t think any of the medicine was able to go through the line. He was discharged later that morning!

On Saturday, December 7th, he was scheduled to have his MRI. We had been waiting for that day since his last scan in October. If you haven’t seen it yet, check out my latest vlog here.

We are happy with the results, but we’re still trusting God as Kylan continues to heal. His infectious disease doctor said that the infection had significantly improved, but that it wasn’t completely gone. However, because the infection isn’t as aggressive as it has been, he felt comfortable putting in an order for Kylan to have his picc line removed and for him to continue by mouth antibiotics for 8-12 more weeks. He has been taking Rifampin since July and now he is taking the same antibiotic he was getting through his IV, Linezolid, twice a day.

As Kylan continues to recover, Klara has had a cough that will not subside. It started in October and I took her to urgent care for an ear infection. I was told that the amoxicillin she was prescribed should clear her ear infection and that her cough should ease up. Four weeks had passed and she had started to cough so hard that she was vomiting. I took her back to urgent care and they prescribed her a stronger antibiotic. No improvements were made and she was still continuing to vomit from coughing so forcefully. When I took her back to the pediatrician the first week of December, the doctor seemed to think that she had walking pneumonia the entire time. She had started wheezing so she was given an inhaler and another antibiotic to take over 5 days. That still didn’t help and Jordan took her back to the doctor a week later. Fortunately the doctor said that her lungs sounded clear, but she was prescribed a steroid. We never started the steroid medication because she currently has the flu. Since her fever developed last Friday, her cough seemed to subside. Saturday morning she was back at her pediatrician and that’s when she tested positive for the flu, type A. Her fever got as high as 104, but it didn’t last more than 36 hours. She’s still on the mend which means this mama is still lysoling and bleaching everything possible.

Klara also had an appointment with an endocrinologist on December 9th and had several labs done in order for us to better understand some concerns we have been having. A few months ago we scheduled her an appointment with her pediatrician because I had noticed body odor under her arms. I hadn’t noticed it until late August after she had started school and would go out on the playground and get really hot. Other than that it wasn’t an issue, but I still wanted to look into it a little more because that’s not normal for a little girl her age. Her pediatrician ordered an xray on her wrist to determine her bone age. When the results came back showing her bone development as a 7-8 year olds, her doctor referred us to an endocrinologist for a more in depth examination. After lots of questions, lab work, and a couple of weeks spent waiting for results, it was confirmed that Klara is experiencing premature adrenarche, or PA.

The good news is that medications that slow down the progression of true precocious puberty were not needed because PA is different than precocious puberty. Unless we have anymore concerns, the endocrinologist doesn’t need to follow up with Klara.

I have also had some medical concerns and thanks to our new (and very expensive 🤦‍♀️) health insurance, I was able to schedule a physical with my primary care physician last week. I was 3 years overdue for lab work so I was relieved to have that done. Unfortunately, my mom has chronic pancreatitis, my brother had a cancerous tumor in his intestines when he was in his mid 30’s, and I have always had stomach issues. With my family’s history and my current (and past) issues, my doctor recommended that I have a colonoscopy.

Without going into too much detail, I have also had a history of abnormal pap smears my entire life and have had biopsies done several times. My last pap smear showed precancerous cells so I am following up with my OBGYN in a couple of weeks for my annual visit.

I feel like so much has been going on with our family and our health, but I am so grateful for all the good news we have received- reassuring lab results, MRI results, and Kylan’s continued improvements. Thank you to all of the nurses, doctors, specialists, phlebotomists, and pharmacists that play such a huge role in the lives of others each and every day. Y’all are superheroes!