We never know what a new year will bring. So far, 2019 has throw us some curve balls. I often process things through writing and I feel like I need to process January. Here goes...
Wed, January 2, was back to work and school after lots of time together over the holidays. Throughout my day at work, I started getting symptoms of mastitis. I'd had it two other times, so I knew the symptoms well. I called the nurse line and was prescribed the same med I had taken in October for treatment: dicloxacillin for 10 days.
Wed, January 9, as I was heading home from work in the afternoon, I noticed a hive on my right wrist where I had been itchy for the past couple hours. I just through it was a minor irritation and thought nothing of it. As the night continued, the hives spread up my forearm and my scalp started itching. I decided to stop at the gas station to get some Benadryl to take before bed. I was up often in the night and noticed my lips were swelling more each time I woke up.
Thurs, January 10, I called into work and the nurse line right away in the morning. The nurse was concerned with my lips swelling and got me an appointment at the clinic quickly. The only thing that made sense as a cause for the hives and swelling was the dicloxacillin. The doctor told me it would take 12-24 hours for the meds to get out of my system. At the clinic, I was given an epinephrine shot (EpiPen - a fast acting med for allergic reactions) and sent home with a prescription for steroids. The pharmacist told me to take 3 steroid pills in the morning to jump start the meds. By the afternoon, the hives were spreading and my lips were swelling more. I called the clinic again to see if I should be concerned and they said it would just take time for the meds to get out of my system. The nurse I spoke to had actually had a similar reaction to a medication and she said that she had finally gone to the emergency room to get IV meds for faster relief. I decided to go to the emergency room. I got there around 3pm and only waited an hour (I consider that pretty fast for the ER). The doctor started me on IV antihistamines and steroids. The swelling my lips started to go down, but the hives/itching didn't really get much better. My feet also started to swell while I was on the IV. After midnight, I was given a prescription for an antihistamine (Hydroxyzine) and told to rotate taking it with Benadryl every 3 hours. I was also told to stop taking the steroids from the clinic since I was given enough IV steroids to last in my system for 36 hours. I didn't feel like I was really seeing much improvement, but I didn't know what else to do. The nurse said he didn't really see the point it me staying so they could watch me itch and that I would get more relief being at home where I could take a bath. When I got home, I took a baking soda bath, set my alarm for every 3 hours to take meds, and tried to rest. I didn't sleep more than 1-2 hours at a time because of the itching.
Fri, January 11, I asked Brent to stay home because the kids had no school and I knew I couldn't care for them when I was so miserable and had hardly slept (Friday is my scheduled day off work). I called the clinic back to say I wasn't getting any better and was given the same response: it will take time for the meds to get out of my system. All day, I took my meds on schedule, took baking soda baths, and tried topical anti-itch creams. My hives continued to spread all over my body. It seemed that every day I would have certain areas that would ease up a bit in the itching, but then other areas would become more inflamed and itchy. I was absolutely miserable and my hands, feet, and face were swelling along with the hives. By the evening, I called my sister to see if she would come with me back to the emergency room. She was on her way to the gym and was going to see the surgeon she works with so she asked her advice. She said she didn't think that the ER would be able to do anything else. So, I continued with baths and meds and again only slept stretches of 1-2 hours between baths and meds.
Sat, January 12, I called the clinic again in the morning. I knew that they were only open until noon and I wanted to know if I should start taking the steroids again since the IV steroids from the ER should have now been out of my system. I spoke with a very helpful and compassionate nurse who was concerned that my symptoms were still persisting and wanted me to be seen. Luke had a basketball game in town that morning, so we split the family up: Brent and Luke to the game, Nora and Jace to my parent's house with my dad, and my mom went with me to the clinic. At this point, I knew I couldn't drive. I was having shaking episodes and I knew I wasn't in my right mind and was very weak having not slept for three nights and having hardly eaten for days as well. At the clinic, the nurse was very compassionate and kept close tabs on my blood pressure and heart rate. Once the nurse practitioner saw me, she did a quick exam and checked my blood pressure and heart rate again. She decided I needed to be taken by ambulance to the ER. She was concerned I was going into anaphylactic shock even though I was not having any trouble breathing. She said that my blood pressure and heart rate were a sign that this reaction could be impacting my organs. My mom called my sister and Brent and they both met us at the ER while Brent's parents were able to stay with Luke at basketball. On the ride in the ambulance, they tried to get an IV started without success. Thanks for the ambulance ride, I was roomed and seen right away in the ER. I had a wonderful and very attentive consultant who was also concerned that more was going on with this allergic reaction. He was surprised that the Hydroxyzine and Benadryl were giving me no relief and he started treatment with another epinephrine shot (EpiPen). It didn't make much of a difference, which it should because it's fast acting, so he decided to start an epinephrine drip (a constant, slow administration of the drug through an IV). This caused some issues because they were having a very hard time getting an IV started in my arms. I lost track after 6 attempts. They were using ultrasound to help see my veins, but still couldn't get an IV started that worked properly. Finally, one of the nurses suggested a midline IV (a vascular access device) that is placed by a specialized team of nurses in a bedside procedure. The team arrived quickly and got the midline IV started and thus the epinephrine drip. While this was all going on, the doctor spoke with the pharmacist and learned that the dicloxicilin only had a half life of 6 hours...this was also concerning/confusing since the last time I took the medication was 10pm on Wednesday night. The allergic reaction wasn't making sense with the severity and duration of my symptoms. Once on the epi drip, I needed to be admitted to the medical ICU. Apparently epinephrine can only be administered in an ICU setting. Brent spent the day with me while my mom and sister planned a sleepover at our house with Bridget's kids and our kids. Brent wasn't able to stay in my room, so he went home late to get some sleep. My symptoms were getting more tolerable with the epi drip, but I still hardly slept. Epinephrine is commonly known as adrenaline, after all, so my body was running fast. The ICU doesn't have any showers or baths, so sponge baths and ice packs were my only options to help with the itching. We did these as needed around the clock. After midnight, I had been on the epi drip for almost 12 hours. Apparently, the midline IV could only be used to administer the epi drip for 12 hours. In the middle of the night, another specialized nurse team came to give me a different type of vascular access, this time a PICC line that delivers the medication directly to the chest. This procedure took about an hour in the room. Once it the PICC line was placed, the epi drip continued in my new IV access.
Sun, January 13, Brent returned to the hospital in the morning. My hives and swelling were looking better thanks to the epi drip and several other oral antihistamines. The ICU team of doctors ordered an allergy consult. Around noon, the allergy fellow met with us. She then discussed my situation with the allergy consultant and the ICU team. It was decided that I needed to begin weaning off the epi drip that evening. Epinephrine is not a drug that can be used for a long period of time and the hope was that my body would be over the reaction after the 24+ hours on the epi drip. The day went pretty well until they started to taper the epi drip that evening. Again, Brent went home to put the kids to bed and to sleep. Brent's mom stayed the night as well in case anything would happen in the night that Brent would have to head to the hospital. Sunday was one of my hardest nights in the hospital. I love having Sunday evenings home as a family, watching America's Funniest Videos, and relaxing before the week begins. As I was weaning off the epi drip, the hives returned. All of this occurred through the night and I continued to get very little rest. The ICU team was concerned that the hives were returning so they consulted with allergy again and decided to increase the epi drip to the full dose again. Finally in the early morning, I asked the ICU team for something to help me sleep (really I asked for them to knock me out so I could stop itching). They said I couldn't be sedated in case I had a reaction that obstructed by airway, but they could give me Ativan to calm me which might help me sleep. Thank God it did just that! I finally slept for 4 hours until I was greeted by my sister stopping by on her way to work.
Mon, January 14, Brent again returned to the hospital in the morning. I was doing better by then since I was back on the full dose of the epi drip. In the midst of all my body was experiencing, I was also still pumping breast milk throughout my time in the hospital. I was told that it would be best not to give Jace my milk due to all of the meds I was on, so I began to wean from breastfeeding. On Monday, I woke with a sore breast. I was very concerned that I might be starting with mastitis symptoms again, so I contacted the lactation consultant to be sure I was taking the best steps in weaning to avoid mastitis again. We knew I needed to be weaning off the epi drip, so they decided to increase the oral antihistamines and add oral prednisone during the day so they could start an even slower wean off the epi drip again in the evening. The combination of the epi drip and prednisone had my adrenaline running even faster. I tried to take a nap and my body literally wouldn't stop twitching. The slower wean off the epi that night went better, but hives did return, only not as bad. In the middle of the night, the ICU night team does a version of rounds, only they don't typically come into the patient's room. I was awake, so I asked them to come in to talk. I was very emotional. I told the team that I was a mother of three. I couldn't function going home with the continued hives, but I also couldn't continue being away from the kids while I was treated in the hospital. I needed relief and answers. They were sympathetic and I felt better having shared my concerns. Ativan to the rescue again by early morning hours.
Tues, January 15, Brent returned and we kept very close tabs on the hives: were they moving, increasing, swelling??? I was definitely doing better, but I wasn't symptom free either. I continued on oral meds throughout the day and used no epi drip since I was weaned in the middle of the night. Since I was off the epi IV, they were ready to move me from the ICU to a general care floor. I was seen by a family medicine doctor who was very thorough and helpful. He made suggestions for follow up outside of the hospital and explained more of the tests that had been done while I was hospitalized. Thankfully, all of the autoimmune testing came back negative and my thyroid and liver function were good as well. I did test positive for a C-Diff infection (though I had no symptoms) and I tested positive for sapovirus (I also had no symptoms). I would start treatment for the infection, but the virus would just need to run its course. Throughout the day, the hives continued to disappear. I was transferred late afternoon and was especially excited to take a shower! By bed time, I was started to itch some again, but got only a few hives which went away within a few hours. I was finally able to sleep all night.
Wed, January 16, we saw the same family med consultant and made plans to be discharged. By mid-afternoon, I was sent on my way with lots of prescriptions and over the counter meds. I was overwhelmed leaving because I was groggy from all of the meds and having a hard time taking in all of the information I was given. Thankfully, Brent was with me and taking it all in. We stopped at the pharmacy, picked up Jace from my parent's house, and headed home to Brent's mom who was with Nora after school. I was very tired but very happy to be home with my family where I belong.
I was able to be home to rest Thursday through Sunday before returning to work. I've had a couple follow up appointments to check blood work (to be sure I was getting back to baseline after the epi drip which impacted my blood pressure and blood sugars) and things are getting back to normal. I continued the antibiotic and prednisone for 10 days but will continue on the oral antihistamines until I'm seen by allergy the beginning of March. I'm not exactly sure what all that appointment will entail?
In the midst of this event, both of our families were amazing. Our parents and my sister were so very helpful in dropping everything to help with our kids while Brent spent as much time at the hospital as he could. There were some very scary times for me and it meant so much to have Brent with me and to know our kids were in good hands. I missed them like crazy. We called, video chatted, and texted often, but my heart was broken being away from home. I was able to sneak peeks at Jace while he slept in his crib thanks to the video monitor in his room that I can view on my phone.
In the midst of this event, both of our families were also dealing with other family stuff. My grandpa was overnight at St Mary's as well for a procedure the day I was heading home. My sister was keeping tabs on my grandma while she waited and my grandpa's updates from the procedure team. Brent's family was also dealing with stressful family stuff.
This life can be hard and it can push us further than we think we can be pushed. After our rough January, I am so very thankful for our families and their willingness to sacrifice for us. I am so grateful that our kids were adaptable and that my husband is a rock star. He was everything he could be for me and for the kids while he was torn between the hospital and home. He was also working remotely for work as much as he could during downtime in the hospital. I am so grateful for our overall good health and for our health insurance.
I'm not sure this post is capturing all of my emotions throughout and after this event, but it does feel good to tell this story from the other side. I hope I never go through anything like this again. I hope that I learn answers as to why this happened when I see allergy in March. I hope the rest of 2019 has many more ordinary days with my family and much less stress. But, I also have a very different perspective on this side too. I love putting my kids to bed at night. I love coming to bed with my hubby and cuddling into the covers. I missed these things dearly. The ordinary stuff of life is so very precious. It's easy to miss the joys of the ordinary when we are "going through the motions" every day. After experiencing our January, I am much more grateful for the ordinary times with the ones I call mine 💓
