Axtons Battle with Addisons Disease

On August 9th Axton was admitted to Fremont Health. He had been unable to keep anything down since the evening prior. On the 8th he was taken to the Dr and diagnosed with severe constipation.. Originally the plan was to get him hydrated and flush his bowels with a medication called Go Lightly. After numerous attempts to get an IV started and a check of his blood pressure things quickly spiraled. The nurse informed my husband and I that he needed to be transferred to Children's Hospital ICU. At this time we had no idea what was going on. They told us that he would be transported by ambulance and that the paramedics were on their way. Upon arrival the paramedics assessed the situation and acted quickly to administer fluids.. Unfortunately to do so the had to put IO's in both of his legs. An IO is an Intraosseous infusion it is the process of injecting directly into the marrow of a bone to provide a non-collapsible entry point into the systemic venous system. This technique is used to provide fluids and medication when intravenous access is not available or not feasible. To do this they must drill into the bone. It was horrifying. After placing the IOs he was transported to Children's. I rode in the ambulance and my husband followed in his car. Upon arrival a large team began working on Axton. The Dr came in immediately and started directing his team and talking about septic shock. I was in a daze. Unable to wrap my head around what was going on. We were removed from the room and the Dr explained the severity of the situation. I don't even remember all of what he said. I only recall him mentioning the possibility of a ventilator and him saying "we're going to do everything we can to save your boy." I was speechless. How did constipation turn into this?? My husband and I spank to the floor in the hallway. Shocked, Terrified. Confused. Not long after that we were taken to the lobby. We waited for 2 hours until finally the Dr came out. He told us that Axton had presented with Septic Shock, acute renal failure, and acute respiratory failure.. He said that in this situation there was a 20-30% mortality rate a again assured us he would do everything he could to save our boy. He explained that Axton had to be intubated and that when they were finished getting him stabilized we could see him. My head was spinning. I couldn't bare the thought of losing my one and only son. I cannot describe the fear I felt. My husband and I took turns breaking down. When I broke he was the strong one and vice versa. Finally at nearly 1am we were taken back to the room. There on the table was our 10 year old son..... Tubes and wires coming out from everywhere. On a ventilator and looking lifeless. Its an image I'll never be able to erase from my mind. We just sat there in shock staring at him. Our families waited in the lobby. We sent everyone except my mom home to get some rest. My mother said she wasn't leaving. She had been here with me before exactly 5 months to the day earlier when my husband was in the ICU at Fremont Health. Justin had to be intubated and put into a medically induced coma when he suffered from acute respiratory failure. The scariest moment of my life was being replayed but this time it was my son. The 3 of us spent the rest of the night watching nurses buzz around the room administering various IVs and monitoring his vitals. This went on for 3 days. We didn't sleep other than dozing off momentarily between the beeping of the machines and the buzzing of the doctors and nurses who were working hard to care for Axton. Finally on Thursday we got word that they hoped to be able to remove the ventilator on Friday. Waiting was torture. When Friday morning came complications arose and we were told that it might be removed later in the afternoon. It was a devastating blow. After what felt like forever we we called back to the conference room to sit in on rounds. Listening to them speak about Axton and his condition every afternoon during rounds was an anxiety inducing experience.. Thankfully that afternoon the Dr made the call to remove the ventilator right away after reviewing all of the numbers.. We were so relieved. Finally we would be able to hear our child's voice, Something we hadn't been able to since Tuesday evening. They successfully extubated him within the hour. He slowly awoke but was very loopy from all of the meds. We thought that it was over....... The next morning we discovered that Axton was in a lot of pain which stemmed from the site of the IOs on his legs. After an examination the doctors found that their was an infection at the IO sites. They mentioned staph MRSA or MSSA as potential causes. They started a new round of IV antibiotics along with morphine for the pain. He spent the next 3 days crying and moaning in horrible pain. Finally on Wednesday the “infections” started to calm down. This came after 2 MRIs which showed a bone infection in one leg and a soft tissue infection in the other. In the hospital we started physical therapy which will continue on an outpatient basis. We were released Thursday evening after 9 long days in the hospital. During that time I was fired from my job as the Operations Manager at Big Busy B’s. They fired me via email the day after Axton was admitted to the hospital citing "numerous unexcused absences"..... I had 1 unexcused absence. When Axton was sick at the end of July. I was never given the chance to provide a note for leaving work early the Monday before Axton went into the hospital nor the hospital stay. JD was given time  off of work throughout the ordeal using FML A. The Drs from infectious disease and Children's hospital were unable to find the cause for Axton’s infection. They believed it was a gram negative bacteria. Due to the paramedics administering antibiotics while we were in route to the hospital nothing ever grew on the various cultures that were taken. We thought we would never know what exactly caused him to get so ill so quickly... He was sent home but had to use a walker and had a PICC line that we used to administer his antibiotics which he needed to receive for 6 weeks. The PICC line came out and we were switched to oral antibiotics.  We thought the nightmare was nearly over…..

On September 9th Axton went to his primary care Dr presenting the same symptoms that put him in the hospital the first go around.  He was again rushed to the ICU at Children’s.  The doctors were baffled.  After reviewing his lab work from the previous stay they decided to check Axton’s adrenal glands.  Sure enough, the result came back and confirmed their suspicions.  Axton’s adrenal gland were not producing cortisol, a hormone that is vital to life.  It controls blood pressure, metabolism, potassium and sodium levels among other things.  Finally they were on to something.  They did an ACTH test that confirmed that Axton had Primary Adrenal Failure aka Addison’s Disease.  After further testing they were able to determine that it was brought on due to an autoimmune disorder.  He never had an infection at all, though his symptoms presented as such.  Addison’s Disease is very rare.  Axton’s primary care doctor told us that a primary care physician may not treat a patient with Addison’s at all within their entire career.  He will spend the rest of his life taking steroids three times a day.  When he is ill, he will take a triple dose, and when he is very ill or seriously injured he must have an emergency injection and be rushed to the ER.  His medication is saving his life everyday, without it his body would shut down.  Addison’s Disease can quickly become life threatening.  He needs to wear a medical ID bracelet indicating that he is adrenal insufficient.  His life has forever changed overnight.  He is taking it in stride, forever a positive little dude.  We have some major adjustments to make to our lives to cope with this diagnosis.  Axton went to his second day of school on September 13th, he made it two days before contracting a virus and ending up back down.  As the virus began to fade and he began to perk back up, his body rebelled yet again.  This time with a period of vomiting on the 17th, vomiting can be very dangerous for an Addison’s patient.  The school is working with us and has been incredibly supportive.  We are hopeful for the future, but we realize that this is something that we must constantly monitor.  We are very thankful for the love and support from our friends family and our community!!  Thank you all and God bless!!!