Seattle neurology appointment

Read Part 1 , Part 2 , or Part 3 if you missed it. | Part 4 | That evening on February 20th, I was transported by ambulance back to the 14C medicine floor. It was such a scary time. 😢 The sepsis caused my body to go into metabolic acidosis. So they quickly treated that with IV bicarbonate and started me on broad-spectrum IV antibiotics while we waited for my blood cultures to come back. I became leukopenic and anemic because my bone marrow got affected. 🥺 This infection wreaked havoc on my kidneys so I continually had to be repleted with large amounts of IV electrolytes (especially potassium) each day. My blood cultures from my port ended up growing Staph Epidermidis. Knowing the cause of my symptoms was an answer to prayer, and the infectious disease doctors immediately started me on an IV antibiotic sensitive to that specific strain of bacteria. I was admitted for 5 weeks + 1 day (the total from not only this stay for sepsis but also when I was admitted for the mitochondrial crash). Being in the hospital for 2 difficult diagnoses that happened back to back was the hardest thing I’ve ever experienced. I thank God for how he graciously gave some happy times in the midst of it. I loved seeing the therapy dog and was over the moon when the medicine floor kindly let my family bring my brother’s dog to visit me. 😊 I also had some amazing nurses. There was a special night nurse assigned to me, and I’ll never forget him. Even when he was no longer part of my care team, he came to visit me each night he worked—isn’t that so sweet? 🥲 But for the most part, inpatient life was scary and traumatic. And as I pondered these last few months, trying to make sense of it all, I was reminded of several things: God never abandoned me in my darkest hour. ❤️ Being inpatient for weeks was brutal and like a prison (not once did I leave my hospital room because I had no energy). All those days, doctors, residents, medical students, phlebotomists, pharmacists, IV therapists, dietitians, respiratory therapists, CNAs, and nurses would continually come to my room. Not to mention every time medications were given or IV bags had to be started/stopped or when the multiple pumps alarmed. The exhaustion along with the pain was unreal. I felt so weak and helpless, not just physically. This challenging time reminded me that I cannot do life without Christ. Jesus said, “Apart from me you can do nothing” (John 15:5). And that is so true. During this whole trial, the Lord was the sustainer of my days. He gave me his strength, minute by minute. Even though God always supplied me with grace to carry on, I want you to know that I still struggled with great fear while in the thick of it. When the pain and suffering overwhelmed me, it was difficult at times for my eyes to see him working behind the scenes. Numerous questions weighed heavily on my shoulders, and I felt so alone each day. But as I processed everything, this trial reminded me that no one knows and understands my suffering more than Jesus. ❤️ Matthew 8:17 says, “He took our illnesses and bore our diseases.” Isn’t it so comforting that Jesus knows what we’re going through? Even he had questions when he cried on the cross, “My God, my God, why have you forsaken me?” (Matthew 27:46) So when I experience doubts and questions in the future (whether in the hospital or at home), I pray that I will always take them to the Lord and not hold everything in. I’m definitely still a work in progress, though.. I wanted to close this mini series of posts by sharing a verse from Psalm 31:7 (ESV). What a coincidence that I’m 31 years and 7 months old! 😆 “I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul.” This verse sums up these last few months. God always sees my pain, and I’m never alone (even though it may sometimes seem like it). He has “known my soul in adversities,” as the New King James translation says of vs. 7. I praise God for his faithfulness and mercy on my life. I also want to give thanks to him that I’m back off the TPN (IV nutrition) and able to eat orally again like before! My muscle weakness has improved as well. 🥲 There are some other concerning issues going on, but I will share a more in-depth update later.. Thank you for reading Parts 1-4 and continuing to pray for me. This has been quite the journey, and I’m so grateful to have such faithful prayer warriors!! 🫶🏻

Read Part 1 and Part 2 if you missed it.  | Part 3 | After numerous days inpatient, I was ready to begin physical therapy at home and work my way off the TPN (IV nutrition). On February 19th, I ended up getting enrolled into a fairly new 1-year old program called “Hospital at Home.” It’s a weird concept, but those who do HAH are still considered inpatient—the only setting that’s different is you can sleep in your own bed and the nurses come to your home. You also are connected to doctors virtually through a tablet. In theory, that probably sounds amazing, but for complex patients like me, I regretted doing HAH because it was complicated and stressful. For example, the leg pain was still so severe, and each time I took pain medicine every 2 hours, I had to log onto the tablet and talk to the nurse who charted everything…. Even during the middle of the night, I had to show the nurse which meds I was taking and what dosage. It unfortunately wasn’t restful, and there were a bunch of other challenges while I was with HAH. By the next morning, I was definitely ready to be discharged from the “hospital” since a lot could be done outpatient. Around 11:45 AM on February 20th, a nurse practitioner came to my house to make sure I was medically stable and ready for discharge. She agreed I was because my vitals were perfect. She left, and another nurse was scheduled to arrive sometime in the afternoon to stop my TPN for the day. But, in the blink of an eye, things changed yet again and the nystagmus suddenly came back with a vengeance. I could barely see out of my eyes (because they shook so much), and when I went to lay down, I asked my mom if the heat was on. She said yes, but I felt soo cold. When the last nurse arrived to stop the infusion, she took my vitals which showed that I spiked a high fever out of the blue. I was so devastated by this turn of events and cried, “I can’t do this again.” 😭 I felt weary, down to my very bones. Experiencing all my usual sepsis symptoms (fever, chills, high heart rate and respirations, severe low back pain, etc.), I hit rock bottom and was extremely distressed that I had to go back to the hospital. 😔 While the doctors scrambled to find a bed available for me, I physically got even worse. During that scary and emotional time, the nurse was so compassionate and caring. I know God in his loving kindness handpicked her especially for me that day. She stayed right by my bedside and encouraged me with words filled with hope. 🥹 She saw a devotional by Joni Eareckson Tada on my nightstand and asked if I was a believer. I nodded, and she immediately began praying for me. 😭❤️ In the midst of this whole trial, some days God felt far away. 🥺 I could really resonate with the psalmist’s cries—“Why are you so far from saving me, from the words of my groaning?” (Psalm 22:1) But when my nurse prayed for me, it was in that very moment I felt God’s presence and peace so near. It was like he knew I needed some tangible comfort to hold on to. I felt so seen and loved by him. I’ll never forget the sweet nurse he sent and the prayers she lifted up. ❤️ Through her, the Lord revived my soul to prepare me for this latest battle. Up next: Part 4…