ER visit for Alex

 Wow! That may have been the quickest ER visit ever for Alex. I realized this morning that some of you who are newer to our lives may not understand why we have to go to the ER so frequently. So here is a short explanation before I update on this morning. 

Alex has what is called a Central Line. It is a "permanent IV" placed into a large vein. The tip of a central line sits just outside of the heart. Having this line puts Alex at a very high risk for Sepsis (blood stream infection). Sepsis often leads to Septic Shock which is fatal 40-60% of the time. With Sepsis you can go from being totally fine to fighting for your life in a very short period of time. Immediate intervention is necessary for the best outcomes. Due to this, Alex has to go to the ER for any temperature greater than 101. When he was younger they would ALWAYS keep him for 48 hours and give IV antibiotics until blood cultures came back showing there was no infection in his line/bloodstream. As Alex has gotten older and we know his body better and with the improvement of some labs that are able to give a high likelihood of sepsis, we have occasionally not been admitted for 48 hours. And when I say occasionally, I mean like 3 times in 16 years. 😉

That brings us to today...Alex had a headache last night, but was otherwise fine. He said he didn't feel great in the middle of the night, but nothing alarming. He woke up around 5 and "knew" he was getting sick. He woke me up shortly after. I took his temperature around 6 and it was 101.3. I started to pack up. His temp before we left was 101.9 (which isn't super high for Alex. He tends to run over 105 when he is really sick). We got to the ER around 7:30. We were immediately taken to a room. They ran labs and performed a Covid test. The doctor and nurse were both amazing. Once Alex got his large stress dose of steroids for his adrenal insufficiency he started to feel better. By the time labs started to come back he was feeling "almost normal". His labs were pretty close to his baseline. The lab that is indicative of sepsis was normal. His pancreas pain is no worse than normal. His Covid and Flu swabs were negative. So they have blood cultures started. He got doses of 2 extremely strong IV antibiotics. At the end of the day, the risk of having him in the hospital right now outweighs the risk of being home. They will call if his cultures grow anything. I will take him back if he worsens. But for now we are home.

Thank you to everyone who prayed for us this morning. A special thank you to Sonny, who always rushes over with a coffee for me when he finds out we are at the hospital. It is so nice to see a friendly face and have a warm coffee in these days of only one caregiver. 

Please continue to pray that Alex does not worsen and we are able to enjoy Thanksgiving together as a family.

Ali