Day 797 - It's Not Allergies! 🤧🤒 Going to the ER! 🚑🏥
Tuesday, March 7th, 2023
This is a very long post, sorry!
⚠️ 🌅 Around 6am, James showed signs of distress. His respiratory rate and heart rate was high. Mom took his temp and it was 100.7. This wasn't just allergies! Mom put James on the ventilator after sleeping with his HME. We figured since he was still trached but it made sense to use the ventilator to support him if he was having labored breathing. She went upstairs to let Dad know that she was taking James to the ER. He decided to come along too. We did an emergency trach change before leaving just in case there was a plug. The rule of thumb is, "When in doubt, change it out". In James' whole life we have never seen a plug. Every time we have done a trach change, his trach looks very clean. This was the same as all the others. It was our first time going to the ER in the morning. Typically we are leaving the house around 9pm or 10pm at night and having to deal with night shift. We headed to St Joe's because it was the closest and James was in respiratory distress. We figured that day shift would be better, we were wrong. 😕 We knew that by making the decision to go to the ER James would not get decannulated on Thursday and everything would get cancelled, but at this rate he would fail the overnight evaluation anyhow. It was better that we figure out what's wrong now and just reschedule than fail and James be marked as unstable when it's actually something viral or bacterial.
We had a short wait in the lobby and was immediately brought back to a room in the ER. Pretty sure this was because James was on a ventilator with respiratory distress. He is a priority. The nurse we had in the ER was super stressed, overwhelmed, and not familiar with trach kids. Our RT was an older man who was also not familiar with trachs and ventilators. It is mind-blowing considering that this is literally their job. We understand that almost all hospitals are understaffed right now and have a lot of green medical staff ⚕️. It's just so unfortunate that nowadays you have to accept bad bed side care and inexperience. 👩⚕️ The nurse tried to get James' blood pressure using a blood pressure cuff and it was hard to do because he is a toddler who does not want it taken. Mom let her know that they haven't been able to get a blood pressure on him for the last 6 months at any doctor's office because he moves too much. James was crying and squirming around. She was very stressed out and yelled at James saying, "This isn't fun for me either!". Completely unnecessary, he is only 2 years old. The RT 🫁 on the other hand was not stressed out but pretty clueless on the things that he should know a lot about. Literally every single thing that needed to be done either they were bringing in the wrong medical supply or was trying to attach James to something that didn't make any sense. It's like they didn't understand what a ventilator did, or that he had a trach, or how an inline suction catheter worked. It was just mind blowing and super frustrating for us. We have no problem teaching; the problem is when their egos won't let them learn from a medical parent. Over confidence with incompetence is going to get someone killed. There's no room for ego in health care.
We ended up taking him off of the ventilator because his numbers looked good. We put him on the HME without any oxygen. The plan was to get an x-ray, a respiratory panel (nasal swab), sputum culture, and blood work (of course that involved getting an IV). The x-ray and nasal swab went smoothly.
💉🩸They asked us if we needed to get the IV team for blood work even though it says so in his chart. And we said yes. Of course this didn't matter and the ultrasound trained nurse still wanted to try to find a vein on James even though we stressed several times that he is a really hard stick. She seemed very green and nervous. She wrapped James' arms tightly with a tourniquet. She looked at both arms several times. They were literally purple and Mom told her that she needed to untie them. She said, "Oh yes they don't actually need to be on right now". Really?! 🤬 So his arms are just turning purple for nothing? Incompetence was the word of the day. Finally someone from the IV team came, someone that had worked on James previously when he was inpatient. To be honest she seemed in a bad mood and frustrated that she needed to do James' IV. What's new? It seems that everybody hated their job. At least she was good at her job and we could always count on her to get the IV in one stick. Thank goodness the random ultrasound trained nurse did not try sticking James. Mom would have been livid. One of the most annoying phrases to hear as a parent is, "I just want to take a look". No, you are not going to practice on my child.
🫁 The RT was directed to give James an Albuterol treatment. Mom had done pulmicort before we left the house. The RT did not know how to give a nebulizer treatment off of the ventilator. Mom explained that we always just used the ventilator at home because we did not have any equipment to do so off the vent. He was very confident that he knew what he was doing, but it was clear to us he had no idea. They also needed to do a sputum culture and he did not want us to use the inline Ballard because it was 6 days old (normally changed on Wednesdays trach change day). We were running short on inline Ballards at the house because we received a bad batch where all of the plastic bags ripped open making them unsterile. Anyways, the RT said we needed an adapter. He brought a new adult inline ballard, so that the sputum culture 🧫 would be a clean catch. What he didn't understand was that an adult catheter is going to be much bigger. He actually tried to push the catheter into James' trach. James has an 8FR catheter and the ballard that he brought was 16 FR. As an example it was like trying to push a pencil through the eye of a needle. Like this is really basic RT stuff here, honestly it's probably more like just common sense. There was absolutely none. Eventually he got a pediatric inline ballard for us to use for the sputum culture 🧫. Mom had to walk him through the process of how to hook it up and what to do. After the sputum culture was sent off, he still needed to run James' nebulizer treatment. He connected the nebulizer directly to James' ballard. James looked distressed like he couldn't breathe. Mom disconnected it and told him she didn't think it should be connected like this. Why? Because Mom has asked a few times in different FB groups about options for how to do nebulizers off the vent. And this setup was never an option given. If it was safe, it would have been suggested. The RT acted very confident that this was the correct setup and reconnected him. Mom could sense he wasn't sure. James was struggling. It turns out James was not really able to exhale during the treatment! So dangerous!
🦠 The ER Doctor came in to let us know that James had RSV! The ER Doctor recommended that James get admitted and stay for overnight observation. Mom agreed that she did not feel comfortable going home with his current respiratory rate. His oxygen was fine, but his respiratory rate was over 60 why laying still, normally at 30. His heart rate at one point was up to 212 (but staying around 150), normally 130. He was also retracting.
🌈 The More You Know ~ To learn more about RSV click here, https://www.knowingrsv.com. It's a virus and can be very serious to infants and the medically complex. We also are still waiting to see if James has a trach infection on top of it, but the sputum culture won't be back for a few days. James had been getting Synagis shots as a preventative for RSV for the last 2 years (5 shots a flu season; Sept-Jan). 💉 Once they turn 2 years old insurance no longer covers these shots, and they run $3600 a piece. His last shot was on January 3rd and they only last about a month. Officially RSV ends March 1st but it looks like we didn't get that lucky. How did he get it? Probably from physical therapy at the hospital. It's the only place where there are a bunch of little kids all playing with the same toys, and playing together sometimes. These appointments are back to back every 30 minutes. Do the therapists really have time to wipe down every toy in between? 🧮 Doubt it.
🕚 We were finally admitted into the PICU around 11am. It took about 2 hours to get settled, go over medications, update everyone on his condition, and what they did in the ER. Spoke with registration twice, a nutritionist regarding how they didn't carry his Pediatric Compleat 1.0 calorie, and child life came by with toys. We saw familiar faces and had several former nurses, PAs, and Doctors, all come see James' all grown up. Everyone said they didn't recognize him and he had so much hair! 🤩 The PICU doctor joked, "Nice to meet you Mom and Dad" when in fact we basically lived together for 2½ months. The PICU was so different than the ER. Night and Day. Friendly nurses willing to listen to us versus just doing things their way. It's so much easier for them too, less work because we basically just handle everything for them!
👨🏻💻 Dad needed to get to work which meant setting up a desk behind James' medical crib. The phone service 📶 is awful for some reason in the PICU so Dad had to use the WIFI for all of his Zoom calls. We decided that Dad would leave first for a break for a few hours and then switch with Mom. Mom stayed overnight with James and got to sleep on the PICU chair again. The night nurse was great and the RTs were short staffed but at least they understood how to give a nebulizer treatment with a trach mask. The night shift doctor was the PICU Director who is the best doctor ever. Hand down best bedside manner in all of health-care. He is retiring and although it is sad for us we are glad he can get out of the mess that is the hospital system right now! 😂 He said despite the circumstance, he was happy he got to see James because they so rarely get to see these toddlers come back all grown up.
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| ⚠️ Above: Dangerous setup for nebulizer ⚠️ |
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