Day 239 - 911 Call 🚑 EMS 🏥 Back in the Hospital
Thursday, August 26, 2021
3:00am: James was making a new weird choking sound. After 30 minutes of Mom troubleshooting on her own she screamed for Dad to come downstairs. Thank goodness Aunt Robin is a light sleeper she was up immediately knocking on his bedroom door. As everyone came downstairs (except for the sleeping dogs), Mom let them know that James doesn't look good and the pulse ox isn't reading correctly. She already had increased the oxygen to 5 liters (40%) on the oxygen concentrator, which is our max allowance. He’s completely inconsolable, his heart rate and respiratory rate are extremely high. When the pulse ox does pickup it says his heart rate is 190 and the respiratory rate is 100. He is desating and then pulse ox would say everything is in the 40s, which we knew wasn't accurate so we couldn't rely on the machine. We just had to assess him by looking at him. Mom and Dad go through all of the care training that they were taught.
Several things were done... Suctioning his secretions to clear the line of any muscus plugs, dumping water from the circuit (unfortunately the LTV ventilator is a very wet circuit) so that James does not get rain out. Rain out is when condensation in the tubing builds up and then the water from the circuit flows into his trach and drowns him. Mom has had to empty the water from his circuit every hour throughout the night for the past two nights. (This past Mother's Day Mom read about how one of the moms in the trach Facebook group had missed her 2-hour alarm to empty the water from her baby's circuit and she ended up needing to do chest compressions and get air lifted to the nearest children's hospital. Happy Mother's Day.) We tried everything from changing his diaper to giving him a pacifier to calm him, venting the G-tube with a syringe to release additional gas (even though this is getting vented to a diaper (sometimes we are able to position the syringe high enough where a lot more air comes out), sitting him up and patting him on the back, cuddling him and rocking him.
James was still inconsolable and continued making these choking sounds. After approximately 2 hours of this not working, we gave him an Albuterol treatment and did an emergency trach change. Nothing helped. We then stopped the feed in case what he was experiencing was reflux. During this while time the pulse ox wasn't reading and we changed new ones 3x. (We only get 2 a month 🤯 so we're screwed). James was having bloody secretions when we would suction his trach, and he was also having blood come out in his stomach in his G-tube.
We normally would not post any pictures or videos of him in distress but we are doing so in case this may help others and to give you context. Mom added this video to the Mom's of Trach Babies Facebook group asking for help, and almost everybody's response was that he was having a seizure or hiccups. We don't believe he was having either. A lot of people did suggest to go into the hospital.
James finally fell asleep with Mom holding him in a chair from 6am to 8am. Dad slept next to them on the air mattress. At 8am, Dad gave James his meds and turned his feed back on and then he woke up really irritated again. From 8-10am, James was again, having seizure-like symptoms (eyes rolled to back of head, color change, agitated, making a unique sound like the cross between a hiccup and choking, increased heart rate, chest retractions, 100+ breaths per minute).
Dad then switched with Mom and held James and that seemed to calm him down again. Just in time, the nurse from the staffing agency came at 10am for her Clinical Assessment. This was just mainly trip have Mom sign a bunch of paperwork which lasted from 10-11:30a. She did a quick assessment on James and said everything was looking good. Well he was settled at this point. Mom showed her the video but she didn't have much to say.
After she left, James got a little fussy and that rose into an hour of another episode, that was another acute BPD or seizure like episode. So, dad called the pediatrician that was scheduled to see him on Friday to see him today, but they were on lunch between 12-1p. Then we called the Nurse Manager who left Mom a voicemail and explained the situation to her. She got the doctor on the phone and after explaining everything they told us to call 911 and have James brought to the emergency room ASAP. They suggested that we bag him until he arrives. This was a very tough decision for Mom and Dad due to James getting the air he needed and not having any obstructions to his breathing. The ventilator is much better at matching what breaths James needs versus us bagging him. So, we decided to keep him on the vent instead of bagging, due to the training that we received and assessing the situation. Later, we found out from several other Doctors that was the right call.
12:45pm: As Dad called 911, Mom was holding James and attempting to remain calm. This was a very climatic experience for both of us. Not to mention Juju and Aunt Robin are watching this whole thing go down (since 3am). Neither of us ever thought we would have to make this call and definitely not this soon into James coming home. As Dad called 911, he attempted to remain calm and explain the details. (But to be honest, we were both crying as the call was being made.) They sent out their team within minutes. We quickly packed up the emergency trach bag. Mom asked Juju to grab the trach that was soaking from our emergency trach change and to dry it off as much as possible to pack everything up. It was intense!
🚨 🚒 🚨 The EMTs were very well-trained, extremely accommodating, and did a great job at transporting Mom and James. They asked a lot of questions about the equipment we had, how to disconnect, and figured out what equipment they had in the ambulance that was equivalent. We ended up leaving our pulse ox machine and suction machine out the house because they had these on the ambulance. Mom held James on the stretcher with the emergency trach bag and her cell phone. As they loaded they into the ambulance, Dad loaded up the car quickly to follow behind them. One of the EMTs said, please do not follow us as we go through red lights. Dad kind of missed that message as he raced behind doesn't the street bumper to bumper. 🤦♀️ Mom tried waving him down to stop, but you cannot see into the back of the ambulance windows. In the ambulance, one EMT said "he needs to get off our ass". So, they had to open the back door and signal Dad to slow down and back off. 😂
🦺 🚑 They were very helpful with telling Mom that his stats and his color looked good the entire ride. We went through red lights, drove on the wrong side of the road, and went around traffic. During this time we tried to get a pulse ox on James but it would not read on his toe, foot, or hand. So Mom ending up holding it on his earlobe squeezing it just long enough to get a reading. His oxygen was 89, so they decided not to bag him. Mom suctioned him and continued to get bloody secretions. We did not have saline bullets to flush, so one of the EMTs gave Mom a 5ml a syringe that was sodium chloride to flush the line.
When we arrived at the Hospital they rushed us back to an ER room. Dad was told that it was only one parent at a time due to covid, so he ended up going home (but only after several attempts of asking for exceptions to be made).
Of course getting an IV on James was awful. Between three different people there was four IV attempts. James has a bruised up bloody arm. Mom asked them to give him Versed but the only gave it to him after the 3rd IV attempt. One of the IV team members suggested that James gets a port because he's has to get poked all the time. This is the most idiotic thing we've ever heard. Mom had to clarify that he does NOT have to get poked all the time but that when he does, multiple people have to make multiple attempts!! Even with an ultrasound machine. And yes he is very strong for the 80th time!
The ER Nurses were awesome, very good at their jobs. They tested him for RSV and covid which were both negative. His electrolyte panel came back fine. The X-ray of his lungs were fine, and the X-ray of his GI showed his GJ in the correct location. The only difference was that his PEEP was at 12 instead of 10. It was frustrating not getting answers.
6:00pm We were admitted into the PICU. This entire time Mom and James were in a freezing closet of a room, hungry and cold. This was first time Mom was held to lay down on a bed to hold her baby.
They ended up doing a sputum culture 🧫 to check for infection in the trach, which would take 48 hours to get results. Mom ended up meeting Dad in the PICU room and switching places with her so she could go home to shower, eat, and sleep. And we're back.... familiar faces that were surprised to see us.
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