Day 322 - Story Time Part 2: Two ER Visits in 24 Hours

Wednesday, November 17th, 2021

1:00am James fell asleep for the short car ride home. When we got home Mom carried James in his car seat with the ventilator over her shoulder. This was the first time she tried this, to avoid getting out the stroller. She walked quickly into the house so that she could reconnect him to the oxygen concentrator. Jess looked up an Uber back to the hospital to get her car. With James sitting in the car seat on the floor Mom switched James back to the home ventilator which involves some fast thinking and very loud alarms. Then she picked him up from the car seat to put him in his bed and noticed that the floor was all wet. His entire GJ button was completely out! Mom was staring at James' empty stoma. His stomach contents had poured out like a waterfall all over the car seat and floor. The balloon was popped and deflated. Mom grabbed the rubber catheter taped to the the side of the bed and stuck it in his stoma to prevent it from closing. It was hard to keep down so you have to use a lot of tape and tie a knot or else it just comes out of the end of the catheter. It took a couple tries to get it stabilized. Everything was a mess, his bed, his car seat, the floor, his clothes were soaked. Mom let Jess know that she was going to call 911 and go back to the hospital. Jess immediately cancelled her Uber back to her car and asked how she could help. Mom called 911 and went over all of the information in tears. It is literally impossible for Mom to make a 911 call and not cry. It probably didn't help that we were just in the ER and exhausted. At this point Mom knew that we would be getting admitted because this would require a procedure that would need to take place during the day. She quickly changed James into some dry clothes, restocked the emergency to-go bag/diaper bag, and asked Jess if she could find some food in the kitchen, knowing this would be a long night.

1:30am 🚒 🚓🚨 🚔 👨‍🚒👮‍♂️ Fire & Rescue showed up along with policemen. They look like the same crew as the first time we called for an ambulance. Very nice young men. Mom let them know that this was not a respiratory emergency, but that we are required to go to the ER when a GJ is out. AND that we were just charged an hour ago! They couldn't believe it. They asked if James could be put back into his car seat and then strapped down to the gurney. Mom let them know that it was soaking wet but they insisted that we just use a chux underneath him. Mom then switched him back to the travel ventilator. So James and Mom were on their way back to the ER, while Jess patiently waited outside for an Uber.

1:45am We're back in the ER! Except this time we can skip the waiting room. Thank the Lord! Fire & Rescue has secret codes open up all the doors and get us right back into a room in the ER. The same ER Doctor popped her head in asking what had happened. Mom explained that the button was deflated and the entire tubing came out. Mom told the ER Doctor she thought that maybe too much water was put in to the balloon since it only requires 4ml. She couldn't believe we were back but everyone knew we were getting admitted this time. That means James needed an IV. Unfortunately the IV team went home for the night.

2:15am Surprisingly enough someone who was not part of the IV team managed to get an IV in James' right wrist on their first try. One stick is so much better than 15! Although because it was in his wrist, everytime James moved his arm the alarm would sound "occluded" until a nurse could come in to reset. So Mom was instructed to hold down his arm, which turned out to be for 2 hours. It was very bright and very loud; Mom put a blanket over James' face to help get him to sleep. 🔊

So neither of us had slept. James' continuous feed had stopped at 5:30pm and Mom hadn't eaten all day because she was busy being the nurse. Our ER nurse let Mom know they were just waiting on a crib in the PICU. Two hours later...

4:15am They found a crib! We were finally admitted into the PICU. A previous PICU nurse actually requested James and she had moved around her assignment to have him. Amazing! Thank goodness for a friendly face!

⚠️This is the point when Mom remembered that the humidification chamber was probably still left on at home, which could easily start a fire. 🔥🧯 It's basically a hot plate with a bowl of water sitting on top. Once the water dissipates, it's just a hot plate which would start burning the plastic.

4:30am So Mom had to leave James in the nurse's care to get an Uber/Lyft home just to turn this off. It wouldn't be worth it to come home with a house on fire! So Mom tried to book a ride with Uber but the app said that none of the payments would work. Mom then tried to book a ride with Lyft but the app did not recognize our home address. 😫 Oh my Lord! She ended up booking a ride with Lyft for a random street that was somewhere in the vicinity of our home and just hoped that the driver would be nice enough to find the right address. Once at home, Mom turned off the humidification chamber and grabbed the rest of his equipment (so she thought). She then heard a very loud beeping noise kind of like a chirp. What's that? Oh one of the smoke alarm batteries is dead. It felt like a hilarious joke. Sorry neighbors, no time to fix that right now! On the drive back to the hospital Mom contacted our home health nurse who was planning on coming in at 7am (different than yesterday's nurse) because the last thing she heard was that we were discharged at midnight. Mom needed to let her know that we were back in the ER and that she would keep her updated and throughout the day.

During this time, Baby James was getting a covid and MRSA nasal swab. Ridiculous.

5:30am Mom got back to the hospital and tried to get an hour of sleep on the famous PICU chair. James had just finally went to sleep. We were both exhausted.

7:00am Another friendly familiar face, our respiratory therapist, knew James well and had him several times in the PICU. She couldn't believe how big he got and that he could hold his own pacifier now! Had to run through the story time with her about how we got here!

9:00am James had to get scheduled for interventional radiology. The GI doctor came in first to tell us that this wouldn't happen today but tomorrow because they didn't have any openings today. But then our PICU Doctor came in shortly after saying that the issue is with anesthesia's availability not IR. So he said he would administer sedation meds himself so that we could get this done today and get discharged. Awesome!

10:00am We had a very nice Day Shift PICU nurse, who was a new and a traveler. She asked Mom how we were planning on getting home. This is where things turn into a nightmare between insurance and our home health staffing agency. Mom let the PICU nurse know know that her car was here now, but that we would need two people in the car. Mom had spoken to our home health nurse who was willing to come to the hospital and be dropped off by her daughter. The issue was that the nurse needed to get this cleared with "Clinical Nurse Manager" and it sounded like this may be an issue. Mom had been updating the on-call "Clinical Nurse Manager" via text since 7pm the day before. It was first suggested to Mom that she needed to get medical transport, which is basically going back home in an ambulance. So our PICU nurse contacted the hospital social worker to get Medical Transport setup for us. This involves contacting our insurance for approval...

11:00am The best part of the whole day was when James' former primary NICU nurse stopped in to see James! She just happened to be floating over in the PICU! I don't know who was more excited Mom or James! 🥰😁

12:30pm James went down to IR. Mom was only allowed to go so far and was not able to see the procedure. So Mom went back to the PICU room to get her keys so she could make ANOTHER trip back to the house because she forgot the oxygen tank when she had grabbed his equipment at 5am!

1:15pm Mom received a call from the new "Clinical Nurse Manager" and she said that our nurse would not be allowed to meet us at the hospital so we could get home. She said this was company policy. This did not make any sense to Mom because nurses go to Doctor's appointments with no issue and this nurse wouldn't even be coming into the hospital. Mom even offered to cover the cost of any additional rides, but she was told to use medical transport even though our home health nurse was completely willing to help us out. 😒

As Mom was pulling out, a car pulled up in front of the house, but Mom thought nothing of it.

1:30pm On the drive back to the hospital, Mom received a call from the PICU nurse letting Mom know that James was done and everything was successful. James received a new GJ button! He recovered in the PICU and they slowly started him back on his feeds. He had only been on IV fluids since 2am when he got the IV.

Mom then receives another call from James' Physical Therapist. She was the car that had just pulled up in front of the house! Ahh! There was some miscommunication because even though we had not officially scheduled a day and time for PT she just assumed this time would work for James, because well we are always home. Well Mom let her know the situation and that James was actually in the hospital. She was very understanding and James would skip this week for PT. 🧘‍♂️

3:00pm Once back at the hospital, Mom talked to the Social Worker about getting an ambulance to go home. Unfortunately Cigna was not approving Medical Transport. They also weren't flat out denying it so, Medicaid could pick up. Typical Cigna. The social worker highly recommended that Mom find someone to drive us home. The Social Worker also did not understand why the home health nurse could not be that person. Mom let her know that Dad was out of the country and that the staffing agency was being unreasonable. Mom needed to inform the staffing agency that medical transport was not going to be an option and that we would be stuck at the hospital.

4:00pm Mom called the staffing agency "Client Coordinator" who was very nice. Mom let her know situation with being stuck at the hospital because the staffing agency was denying the nurse to help us and insurance was not covering Medical Transport. She understood and got one of the higher up execs of the agency on the phone. This woman was also very nice and apologized to Mom saying that the conversation she had earlier in the day with the new "Clinical Nurse Manager" was incorrect. And that she was "new" to the company and wasn't familiar with the policies. She said that they would definitely let our nurse come to the hospital in order for us to get home. And that they even have a separate budget for paying these nurses bonuses for these types of situations. Well that was great news, since we were ready to go home! Our home health nurse was contacted and she was on her way to get dropped off at the hospital by a family member.

5:30pm Mom receives a voicemail and text message from the new "Clinical Nurse Manager" informing Mom know that she was not in the wrong for saying what she had said; they were just making an exception for us. She had obviously been reprimanded. It felt completely inappropriate, unnecessary, and unprofessional. Did this make her feel better? It's sad to see adults act like this. Mom is still in the PICU packing up for discharge. Thanks for letting us know you weren't wrong. Super helpful right now. 🙄

6:00pm We finally arrive at home at what has now only been 24 hours since we originally left for the ER. It felt like days! Unfortunately, our home health nurse needs to leave immediately because her daughter is outside waiting in the car. At this point, Mom takes over wiping James down and changing his clothes. Mom did a solo trach tie change because trach care hadn't been done in 48 hours! Exhausted but now Mom needs to catch up Dad and family over the phone on what happened in the last 24 hours because she is too far behind in the blog...

Tomorrow Mom's family comes into town.

P.S. If you read the blog and are supporting James through his journey we would love for you to pray that his GJ doesn't come out again. 🙏🏻❤️