Day 580 - Long Awaited GJ Replacement! (Story Time)
Tuesday, August 2nd, 2022
Today James had his procedure at the hospital. Even though it was supposed to be a quick and easy procedure it turned out to be a very long 7 hour event!
It started out not being able to find a handicap parking spot at the Children's Hospital. Every single one was taken up on all three floors of the parking garage. For us a handicap parking spot is absolutely necessary to get James out of the car. We need the extra space to open the car door all the way to get his equipment out. Yes, there is a possibility that every single one of those spots was being occupied by someone who truly needed it. However there is a higher probability that people are taking advantage of having a handicap permit. They either don't have the handicap person with them or they just simply don't need it! This is a Public Service Announcement for anyone that you know that is guilty of this! So because we could not find any parking at the Children's Hospital we decided to do valet at the main hospital. St. Joe's is a huge hospital and has several buildings. Honestly we weren't very sure where we were supposed to go anyways. After valeting we went to check-in at the desk waited in the main lobby. Then we were called back to registration and then walked over the Children's Hospital waiting area. She told us that she would give our paperwork to someone and we will be called back. We were never called back. We had several of James' past therapists at the hospital come say hello. They couldn't believe how much progress he's made. An hour went by and it was almost time for our procedure. Eventually a girl came up to us and said she was concerned that we were just waiting there and no one knew we were there. So she told us to check in at the Children's Hospital desk. They in fact had no idea that we were waiting in that lobby. They finally brought us back to what's called the "Day Hospital" for same day procedures. Overall the nurse assigned to James was very nice. We had a new person from the IV team do James' IV and got in one stick so she is our favorite now! James tooka few naps because at this point it had been 4 hours. Then the anesthesia team showed up...
The anesthesia team came in and said "Once we are back there we are going to take him off this vent and put him on our vent. Then we'll put him back on this one at the end. So how does this vent work?" Hmm excuse me, did you just say you're going to take our baby away, disconnect him from his life sustaining device, while also telling us you're not familiar with the machine?! Yes, Mom definitely offended them because she did not feel comfortable with the situation and kept questioning them. Why wasn't a respiratory therapist going to be present? Oh they let us know they were the "Respiratory Experts" but yet didn't know how to work an LTV. One of the most common pediatric home vents. Plus at this hospital they only train on 2 types and this is one of them! If they aren't familiar with this ventilator then why can't a parent go back who does know? Why risk it? Well Mom didn't make any friends. She would rather have them on their toes than be comfortable with a situation and something go wrong. Always avocate like a Mother.
They brought us back for pre-op they let us know that we would need to go to the waiting room the procedure. Mom asked about cauterizing the granulomas that James has around his stoma. Why? Because this is very painful to do with silver nitrate in the office. We've had it done before and James cries. Why not take care of it while he is being sedated under anesthesia? Mom was immediately told "No, we do not do that. That would be a separate procedure. And a doctor would need to put an order in for that". Well that's absolutely not true but Mom was just too tired to argue with incompetent people. Dad wasn't though! So even though Mom told Dad to just forget about it because we already made enemies with the anesthesia team so pissing off the interventional radiology team wasn't going to be the best idea right before they took James back. So Dad asked someone else and they had to ask someone else, and at one point there were five people in this little tiny pre-op holding cell. (On a side note, there has been turnover and new management in this IR department and it just seems very unorganized and chaotic. Unprofessional.) One of what seemed like a head IR guy said "We don't do that here". Mom jumped in and let him know that a friend of hers had her daughter's GJ replaced here at this same hospital and they also cauterized the granuloma tissue at the same time. His snarky response? "I don't know your friend". Maybe this has changed due to the new management. Obviously this is not a change for the better. After some back and forth between the hospital staff and Mom and Dad they found the guy who does wound care. The verdict was that they could cauterize the granulation tissue around his stoma and that that isn't an issue at all (almost like they were planning do it all along). 🤔😡😳 The problem becomes when people answer something that they aren't sure about. The people who told us "No" only has a very specific set of skills we guess and isn't very knowledgeable about the entire procedure, but absolutely should be! Again the unorganization and lack of knowledge was prevalent and terrifying.
Dad and Mom went down to the cafeteria that they lived at for two and a half months while they were in the picu. As soon as we got back to the children's waiting room the nurse said that James was back in the room. It took approximately 1 hour and everything was successful. At this point it was 3:30pm and the nurse told us that James would need to stay in the room for at least another 30 minutes or until he woke up. James looked like he was taking the best nap of his life. It only took about 15 minutes for James to wake up. Mom and Dad got him dressed and started unconnecting and reconnecting equipment getting ready to go home. When trach parents are back in the hospital they would just rather do everything themselves. Good nurses understand that and let them just do their thing.
James continued to nap more at home because he was still groggy from the anesthesia. It was a very long day.
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| So excited to get his GJ changed! |
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| Happy to see old faces! |
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| Watching Moana 🌊 |
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| Ventilator is on the bed with emergency bag including back-up trachs. Oxygen tank is under the bed. Not connected to pulse ox and not hooked up to suction machine. |
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