For those that have followed thus far, thank you! For those just tuning in, prepare for her roller coaster.
It started on Saturday, January 13th. Mia started to have a fever and congestion. We started Tylenol and Motrin with some mucinex. She got better, and life continued on. We went to the park, grocery shopping, just daily activities. Come Monday, Martin Luther King Jr day, I was off work, and decided to keep Mia home, as Skyler and Chloe’ were out of school also. I noticed Mia struggling to breathe a little more than the day before. I continued with our regiment, and all was well. By Tuesday at nap time, I noticed the breathing was worse, but not bad enough to rush to ER.
I got to the Urgent Care at 4pm, it was determined she in fact had pneumonia. Great, antibiotics and home we go. Except they asked me to sign a AMA, or “against medical advice”. That raised a ton of red flags to me. So I had the doctor go back over everything with me again, and still did not understand why they wanted me to sign this form. I decided I was going to take her to the ER at Valley Med. We got there, and the urgent care actually did something right, and let them know that we were on the way. By this point, Mia was clearly struggling to breathe. We were immediately taken back, with a team of doctors waiting. They put an oxygen mask on her, X-rays, monitors, drew blood the whole nine. It was the way the doctors were rushing with concerned looks and monitors continued to go off that really made me realize that something was really wrong. Within 10 minutes, the doctor came back in and said that we would be transported to Seattle Children’s Hospital in the next 30 minutes. They wanted to be sure she was in the best place to give her the best chance in case things got worse, and boy did they. Mia was in respiratory failure. I ran to get the car seat out of the car for the ambulance ride, and Mia stopped breathing, turning blue and no oxygen. She was dying I was sure of it.
Tyler rode in the ambulance and I followed. We arrived at Children’s ER and were greeted again by a team of Doctors. Things were moving fast and I don’t remember much other than hearing him say, he was the attending for PICU, intubation, I’m so sorry, and that “You are lucky that you got her here when you did, or we would be having a very different conversation,”
We moved up to PICU or Pediatric Intensive Care Unit. Within minutes they were intubating her, and hooking her up to monitors and tubes going everywhere and doctors yelling. I was in a daze, crying and not sure what was happening. I don’t remember much of anything other than staring at her. How could my baby girl go from laughing and playing one minute to respiratory failure. I couldn’t wrap my head around it. At some point over the next few days, it was determined that Mia had a severe case of pneumonia and Respiratory Syncytial Virus infection, better know as RSV. The two of these together were causing damage to her lower lungs. Her stats continued to bounce up and down. She would stop breathing, turn blue, heart rate not even registering. All the while, even through all of the sedation this girl was on, all of the pain meds, she fought every step of the way. She was restrained to the bed, but managed to pull her IVs, o2 sensor, blood pressure cuff. She was not having it. And she would go for that breathing tube every chance she got.
Now, great we have a diagnosis, lets treat it, right? There is no treatment for RSV. No magical pill or antibiotic to make it go away, it has to run its course.
I wont go into to much detail of what was endured by all 3 of us, due to time and, well, I am sure you will get the gist…. So, we were admitted to Children’s Hospital for respiratory failure and Mia is now intubated. Over the course of the next few days, lets just say it a blur. Mia started doing better, and then would take a turn for the worse. Then get better and then another problem. We attacked the virus and infection with some antibiotics. After a few days, and comparing X-rays , we determined that the current broad spectrums were not working. Her lungs looked worse than when we were admitted, 2 days prior. The doctors wanted to start her a different more potent antibiotic. Vencomycin. Very heavy duty antibiotic. Had to have warning labels on the door of our isolation room and a big hazardous label on the dispenser. I requested at that time, a kidney function test be done, 2x a day. On Friday, I made sure the night staff knew to get the blood draw for her kidney test, and was told by the attending it was not needed, her levels were great that morning. So they administered her 3rd dose. At some point through the night, Mia also received a bolus shot of it. We started to notice her blood pressure was increased and pretty high, while her HR was down. She was dosed again Saturday morning. They did blood test and hours later (like 8), after her second dose, inform us that one of her levels were a extremely elevated and they would be stopping the Vencomycin.
During these days and the days to follow, Mia is being constantly suctioned, cupped, steroid treatments, more suction, x-ray’s, blood draws, blown IVs, leaking IVs (she swelled up bad), more and more sedation and morphine, then moved to dilaudid, the list goes on and on.
Monday, I poked and prodded and finally got a straight answer. Mia was suffering from high blood pressure, due to the Vencomycin. She had a an acute kidney injury. At the time, I had no clue how close to Kidney failure she was. I met with the kidney doctors and we put her on high blood pressure medication. However, Mia may likely suffer from high blood pressure for a few months, to a few years or be highly susceptible to it as an adult. So now, Mia will be tasked with attending weekly Kidney clinics, taking blood pressure medication and having to monitor her blood pressure daily at home. In addition to this, her lungs may be permanently damaged, and she is more susceptible to getting pneumonia and develop asthma.
This little girl endured so much pain, so much poking and just being uncomfortable. Here we are on day 8 in the PICU, and we are off the ventilator, on the lowest setting of the high flow oxygen, blood pressure meds, IV fluid, feeding tube and we are finally ready to move out of the ICU to the main floor.
Dad and I have not left her side. We have been here every day and night. As hard as this is for me, we asking for some help financially. If you cannot donate, please please continue to pray for her and healing. She has a long road of recovery ahead, and it will not be easy for her.
Thank you again for reading a small part of the hell she and us have endured.