Saturday Night Fever

Hi. It’s Greg again, coming at you from a dark, quiet room on the immune-system-compromised section of the 7 th Floor at Phoenix Children’s Hospital. Sally asked me to write a quick message about the sciencey and mediciney things happening so far. Ha! Like I’m qualified for that. Here is my best impression of what someone who is qualified for that might say. Yesterday (Friday) we went to the clinic to get some blood products because after our Wednesday appointment the doctor realized his hemoglobin and red cell count was fading. There were some warning signs earlier in the week that we were heading down this path. Sally had noticed Tate was running a low-grade fever and being Sally was checking him regularly by both thermometer and the magical mom-hand on the forehead. The fever went away on its own but Tate’s physical condition was worsening (headaches, pain, fatigue – more than normal). We arrived at the clinic and went through the normal process of collecting vitals. Tate had unusually low blood pressure after several readings. They decided to move forward with the transfusion but to also have one of the providers examine him which wasn’t on the itinerary. After about 10 minutes of beginning the transfusion they checked his temperature and it had spiked to 38.6 (101.5) and his CBC came back with 0.1 white cell count making his ANC (Absolute Neutrophil Count) literally 0. While the ANC isn’t the only determining factor it is what the doctor’s typically focus on first to determine a patient’s overall state of their immune system and ability to fend off infection. Neutrophils, as we have learned from previous visits here, are a type of white blood cell that help lead your body’s immune system response to fight off infection. So, having an unusually low blood pressure, a critically low ANC combined with a fever over the threshold Dr. Shah (this friendly, compassionate little brilliant man who we all just love) determined that Tate needed to be transported and admitted to PCH. So that is the buildup and here is what is happening now. He is still fighting a fever. Tylenol is working well to keep it under control but the fever has been coming back once the Tylenol wears off. His blood counts are still very low and he is struggling with headaches, fatigue and just the general sounds of being in a new environment. The buzzing of equipment alarms and staff who come into the room who have not yet been informed of his neuropathic sensitivities add to his distress. The cleaning lady had particularly squeaky shoes for example which really didn’t help him this morning. Not to worry Grandmas, we are minimizing the potential for this with a few firm conversations with the staff and some well-placed signs on his door. His pain is relatively under control. They have drawn blood cultures to see if he is fighting a bacterial infection in his blood and have re-swabbed the sores he has inside his lower lip to see if he is fighting a viral infection. The first swab from last week came back negative meaning no HSV was present but they are double checking. At this point it is just a waiting game. They will pump him full of blood products and platelets and antibiotics to give him a boost that will help his body fight off whatever is causing the fever and they will run all the tests needed to determine what is actually causing the issue. The only real surprise that is a point of concern for us (which will probably not be as much of a concern once we understand it better) is that they found that his cortisol level is low. Cortisol is a hormone produced in the adrenal glands (above the kidneys where he has had other issues early on) which is mainly produced during times of stress. It has a number of functions such as to increase blood sugar when needed. It also helps the metabolic processes to help break down fats, carbs, etc. It can affect ​sleep, mood, anxiety among many other things as it sends signals to the brain to respond in various condition. The main area of our concern is that it also can affect the immune system because it prevents the release of certain substances that cause inflammation in the body. So low cortisol = greater risk of inflammation in the body. That said, high levels of cortisol (which Tate doesn’t have) are known to weaken the immune system also. So without fully understanding how it works it seems like a Damned if you’re high, Damned if you’re low situation. I will be doing some research tonight on interleukin-1 and interleukin-2 and their relation to the body’s immune system and how differing levels of cortisol affects both. Oooooh fun! I really know how to spend a Saturday night. As a response to his low cortisol levels the doctors are giving him hydrocortisone to give him a boost in this area. As of this morning’s conversation with the team they are expecting that his adrenal glands will recover and produce an appropriate amount of cortisol over time. A lot of questions come to mind after that last statement which we will get in the coming days. It is hard to put into words how Sally and I feel being back here. We have had a sense of pride that we have avoided being admitted to the hospital for such a long time when ALL patients typically find themselves admitted several times during the first phases of treatment. You all remember the photos of Sally with her double action disinfectant spray bottles drawn and her germicide facemask on instead of an Old Western bandana looking like she was ready to disinfect a bank instead of rob it? That is a real vision at our house – not even just a pose for the camera. When Dr. Shah told us we were heading back here we were primarily concerned Tate had fallen to a state in which he needed to be monitored so closely but also a little bit disappointed that we didn’t make it to Maintenance without a hospital visit. Now that we are here though we know he is where he needs to be. The staff here does an excellent job first in the quality of care they provide but also in accommodating the needs of patients like Tate who have sensitivities to things that many of their other patients don’t have. There is a learning curve however. The folks at the clinic who see Tate multiple times a week know exactly what to do to accommodate his needs and ours like don’t put Tate in Exam Room #1 because the door squeaks too loud which aggravates his neuropathy and get us the heck out of the waiting room as quickly as possible or Sally The Kid will antibacterialize each and every one of them varmints and their families without thinking twice. The hospital folks are learning quickly how to deal with us and doing great but I miss Michelle and Jodi and Wendy and Angie and Dr. Watanabe and Dr. Shah and the really sweet girl at the front desk and everyone over at the clinic.​