Day 321 - Story Time Part 1: Two ER Visits in 24 Hours

Tuesday, November 16th, 2021

Dad left yesterday and would be out of the country for work this week. Mom has night shift while we have Day nursing.

Today we had our Sunday nurse switch to Tuesdays. She has had James several times but is still learning how ventilators work, in-line suction systems, feeding pumps... basically needing to get up to speed on everything. So Mom spent the day training and handling all of his care. Around 5pm Mom was preparing James for his bath and Trach care when she noticed that his GJ was sticking way out. Essentially his GJ button was coming out and was very loose. 

5:00pm Mom alerted the nurse while holding down his button that his GJ was out and that we needed to go to the ER. Her response was that she needed to eat her tuna sandwich 🥪 because she needs to eat every 3 hours or she doesn't feel well. 🤯 Mom asked her if she was a diabetic and she said "No". 

Once she made her way over to the crib, Mom asked her to check the water in the balloon. The nurse attempts to do this by putting a syringe into his J-tube port. 🤯 Mom said, "That is not correct, I can do it". The nurse would not allow Mom to do it correctly and states that she DOES know what she is doing. The nurse then attempts to use the wrong syringe, not having a clue, and clearly never doing this before. She had no luck in checking the water in the balloon and Mom lost all confidence in her at this point. It is a threat to patient safety when an inexperienced nurse would rather guess and pretend then be honest and ask for help. Dangerous.

5:30pm Mom called the pediatrician's office because that is what we are instructed to do. Once the Doctor called back she stated that most just drive to the hospital so that you have your car. Mom told the nurse that if she could ride in the back with James that she would pay for her Uber back to our house which is 12 minutes away for her to get her car. She agreed just as long as Mom paid for the $8 Uber. 🙄 Mom took gauze and taped down his GJ button so that it stayed in. This is what we were trained to do in this situation. Mom stopped his feeds and gave him 3ml of Tylenol because of the trauma in his stoma. Mom asked the nurse to disconnect the feeding tubing from his extension but she should have know this task was too much. The nurse instead disconnects his entire extension.

Getting James into the car Mom is required to be highly directive when working with a nurse who has not done this before. This nurse had never travelled with us to a doctor's appointment prior, so getting in out of the car with James, a ventilator and all of the equipment is quite an ordeal. At this point Mom needed to move Dad's car out of the driveway, so that she could move her SUV closer to the front door, but Dad's keys were nowhere to be found. So Mom needed to wheel him in the stroller down the front lawn. The most important part of getting James in the car is passing the oxygen tank, ventilator, and car seat to the nurse inside the car. Mom passed the ventilator to the nurse to place inside the car and then directed her to connect the oxygen. The nurse said, "I need to find my phone". Mom repeated, "Right now, I need you to connect the oxygen". The nurse again responded with, "I can't find my phone, I need to find my phone". 🤯 She again was not able to determine what was priority! Then after too many failed attempts, she could not connect the oxygen. She said she could not see and she did not know where to connect it. 🤯 Mom told her that she needed to switch places with her as Mom was holding the stroller so that it did not flip over. Mom then connected the oxygen. 

6:00pm Mom drove to the ER with our nurse in the backseat with James. When we arrived the emergency entrance was under construction 🚧 so we ended up walking to the wrong entrance and had to be escorted by a random employee to the correct side of the building. In the waiting room packed full of people, we waited to be called to registration. At one point, the woman sitting across from Mom let her know that she was there for detox, homeless, and asked if she had any cash. There was a group of them basically looking for a warm in place to sleep. Did we mention there wasn't an empty seat in the waiting room? The nurse asked Mom if she would be okay by herself with James. Mom told her "No", but the nurse just responded saying that she had to work early in the morning and she needed her sleep. The nurse got an Uber back to her car. 

7:00pm James and Mom were brought back to a room in the ER. 

8:30pm James was being escorted to x-ray. Before leaving our room, Mom asked if she should bring the suction machine as this was life saving for James. The nurse assured Mom that every room is setup with that. So when we arrive in the room, James is choking and having a ton of secretions. Mom asked about getting connected to the suction, BUT they were not set up for this and did not have any suction tubing! The x-ray tech asked Mom if she wanted to go back to the room to get our suction tubing. Mind you, this was quite a walk and a maze in this hospital. Mom would have never found the ER. She realizes that was a stupid suggestion and goes herself to find new suction tubing. Finally we are able to relieve James. Not having the ability to suction could cause James his life. 

8:50pm James had an x-ray with contrast which we were told did not show the balloon. We were told that James needed to get a fluoroscopy done (someone mentioned that's what they should have done in the first place) and that the guy who does them leaves at 10pm. We were brought back to our room (holding cell). 

9:15pm All of a sudden the doctor comes in and says that everything looks fine and we can be discharged (but nothing was done and it was still sticking out way too far! 🤷‍♀️). What happened to this tech who was supposed to do a fluoroscopy? 😠 Mom fought for James saying, "Someone needs to check his balloon if everything is fine. We can't leave until this is fixed". But they could not find anyone in the ER that was familiar with a GJ button. 🤯 No one knew how to check it or what syringe to use. The doctor eventually contacted the on-call GI doctor. He suggested that a fluoroscopy of contrast in the balloon to check for a leak. A fluoroscopy would give us a live video image.

Clarification: X-rays are static images. They provide images of the inside of the body in still form. Fluoroscopy imaging provides a live “video” format image, which will show movement in the body or of an instrument. X-rays carry a smaller risk of radiation-related risks than fluoroscopy does.

11:00pm They finally took James back again to put contrast in the balloon to see if there was a leak. It turns out the balloon had absolutely no water in it at all which is the reason it was hanging so far out of him. So he ended up putting a lot of water in the balloon (5ml) which made it really tight (it's supposed to be only 4ml) and we watched under x-ray for the balloon to leak. After 10 minutes it did not leak, so they said they fixed the problem and we were set to be discharged.

The x-ray technician said that because there was no leak the only way for the water to come out it would be as if someone pulled it out with a syringe. He made a comment about our nurse needing to take ownership, because obviously Baby James can't work a syringe. Mom agreed that more people need to accept responsibility for their actions and take ownership of their mistakes. This has been an issue with a few nurses this year. 

12:00am Dad had asked his Office Manager, Jess, if she could be on standby to help Mom and James get home. She was an angel and saved the day! Jess was willing to meet Mom in the parking lot at midnight and drive us home while Mom sat in the back and managed James' ventilator. She would then get an Uber back to her car left in the hospital parking lot. Well that was the plan... TO BE CONTINUED...

1st try - x-ray with contrast

Waiting in ER lobby to register.

Waiting for suction tubing...

2nd try - Brought back for fluoroscopy

Waiting in the parking lot at midnight for "our driver".

P.S. We would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ 

We have obviously extended the cutofff for submissions, being that it is November. This is your last chance to be part of something special. It only take a few minutes.