Day 566 - Emergency Evacuation ☣️, Allergic Reaction 🥵, & Packing up for the ER 🚑

Tuesday, July 19th, 2022

Emergency Evacuation ☣️

The A/C guy came at 8:30am and about 20 minutes later he comes running down the stairs saying, "You need to get the baby out of the house now. We have a freon leak". Mom responded, "He is on a ventilator with oxygen!", letting him know this is huge deal and it's going to take a while. The A/C guy looked shocked as he didn't realize what we all had going on. He reiterated that we need to get him out. Mom's immediate thought was how is going to affect the oxygen tanks? Not only do we have a large oxygen concentrator and an oxygen tank in the living room but we have eight more oxygen tanks in a closet underneath the stairs. 😱 There wasn't any time to discuss the dangers of freon and ask questions. We needed to just take the advice of the professional and evacuate.

Mom immediately went into Dad's home office interrupting his speech saying, "We need to get James out of the house, it's an emergency!". He works from home and unfortunately was in the middle of speaking to a large group of people on Zoom. Mom heard him tell them, "Hey guys I have an emergency, I have to go", but then illogically continued to wrap up with some key points. Mom was very upset since she figured the word "emergency" would be very clear. Mom packed up James' equipment as fast as she could. Disconnected him from his feed and was essentially trying to figure out what was absolutely necessary to get him in a stroller and outside. The fastest Mom has ever done this herself was in 12 minutes, but didn't think they had that kinda time. Everything was left inside the house except James, the ventilator, and his oxygen tank. This means that the pulse ox machine, the feeding pump, emergency bag, suction machine were all left because they weren't absolutely necessary at the time. We weren't getting in the car, we would just be standing across the street.

As Mom was heading out the door Dad joined. Unfortunately at this point Mom was crying, not being able to catch her breath because it was very traumatic. Not only was it distressing because it was an emergency situation, but Mom's expectations of how it would have normally been handled we're not met. Dad realized how upset Mom was and understood that he had made a mistake. He should have immediately stopped what he was doing and followed Mom's direction. What if it was a fire? 🔥 Dad's thought was not the A/C guy seemed calm so it wasn't a big deal. The thing is not everyone is a "freaker-outer" and in a serious situation we would hope that professionals would remain calm.

We are sharing this openly because this is the truth of what happened and this may help others in the future. We all make mistakes and there is no need to sugarcoat an experience for a blog when we can all learn from reality.

Later on the A/C guy walked across the street and got us. He apologized for upsetting Mom. He said he was able to fix it the leak and solder it back together. Mom let him know that we would rather be safe then sorry.

Allergic Reaction 🥵 🚑

Shortly after the fiasco around 11:30am, Mom noticed that James had a light rash all over his body. Mom reached out to a FB group of Medically Complex Children (one of the 53 FB groups she is in) for answers. There were 12 immediate responses. The Moms looked at the photos and said it was an allergic reaction to the antibiotic and said to look up serum sickness. Mind you, we had just called on the doctor on Friday telling her that we thought there was a problem with the antibiotic and she told us that it could not be the antibiotic because we would only see adverse reactions within the first hour. It has now been 5 days. So do we question the doctor again?

Around 4pm we noticed the rash was getting worse. It was spreading fast and getting really red! Mom called the clinic before they closed and left  message. As we were waiting to hear from them we started packing up his equipment to head to the ER. An hour and a half later we received a call back. We were told to email photos and then the doctors would discuss and call us back again! (Now we finally have an email address for the future!) After much deliberation between a couple of Docs they finally they agreed it was probably the Bactrim and to stop it immediately. They also prescribed a new antibiotic Cefdinir and told us to give him Benadryl every 6 hours. We asked if we needed to go to the ER, and she said it was not necessary but it would take a while to clear up and if it had not gone away by Monday we should call them. What happens when an allergic reaction goes untreated for 5 days? Well let's just say we are lucky James already has a trach. 

We truly appreciate his critical care team of specialists but it's also important to question and research sometimes. Yes, Dr. Google. We're thankful for FB Groups, online databases like the National Library of Medicine (NLM), experienced medical parents, and the internet. Without these resources James wouldn't have made it this far. We wouldn't have known about a different type of G-tube (non-ballon) to stop the poppings, he wouldn't have had his hernia surgery so early which ended his bronchospasms, he would have had an untreated UTI, he would be on several unnecessary medications, he would be severely dehydrated if it wasn't for questioning and seeking answers outside of the medical advice given.

We look to the next week ahead with cautious optimism. 🙏🏻❤️

All photos are in order of progresssion.

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com