One of the reasons that I ended up here rather than at one of the other facilities was my Igg infusions. No one had experience with giving the Igg. They couldn't accept my Igg that I got from home because there were policies preventing patients from bringing medication into the facility from home. Because of the cost, they couldn't get it through pharmacy. So, even though I had the medication, everything needed to give an infusion, and even an infusion nurse who could come and give it, it wasn't possible to get it there. Here, they arranged it so that I would go up to Baystate to get my infusions once a week. While it seems that this should be an easy thing, things are never easy, and never without drama.
My appointment was at Baystate for 10 o'clock. The ambulance came at 9, and we were there in plenty of time. I had to take an ambulance since I was a patient going from one facility to another. We got to Baystate and after getting the run-around of where we were actually supposed to go, we got me settled. We got to the first floor, and were told to go to the 8th floor, then when we got there, they directed us back to the first floor, ect, ect. It was quite an ordeal. They get me settled on the stretch, but the stretcher is not in a bay with wall o2. There is only a portable tank underneath. Well this is fine, but of course, portable tanks go quite quickly when you're on 6L. Finally, they found a bay with an o2 hook-up. Why it was so difficult to find a place that had wall o2, I don't know. It would seem obtaining o2 in a hospital shouldn't be difficult. But then nothing is ever as it should be.
My appointment was for 10, but in actuality, they didn't even give me my pre-meds until 1. For some unknown reason the infusion took forever. At home the longest it's taken is 5 hours. I didn't finish until 9:30 (8 1/2 hours after starting).The day nurses left at ~6:30. So they had me moved upstairs to the observation unit. This is the unit that houses the patients that don't necessarily need to be admitted, but they want to watch them overnight to see how they are and make sure they don't need to be admitted. This is fine. I finish my infusion and they call for an ambulance.
As the ambulance comes, I need to use the restroom. The problem - the bathroom in the room isn't handicap accessible. I can't get a wheelchair in there. Well, ok. I then ask the nurse if I could use a handicap access bathroom on the floor. For sure, they have a visitor's bathroom and typically, those have to be handicap accessible. Though what happens if they have a handicapped patient who needs to use a wheelchair, I don't know. Well I am told that there isn't a handicap bathroom on the floor. What? No handicap bathroom? This is a hospital is it not? They didn't figure they might need a bathroom that was handicap accessbile and able to fit a wheelchair? The nurse then asks me if I want to use a bedpan. No, I don't wnat to use a bedpan. I want to use the bathroom! There's no reason for me to have to use a bedpan. I decide that I really have no choice but to wait until we get back to Mount Siani.
In the ambulance, my trach gets clogged with a mucous plug. There is nothing to clean it with and I can't breathe with it clogged. This isn't an emergency because being smart, I brought my extra trach just in case. You should always have an extra in case the trach falls out or whatever. So I open the extra trach, put the clean inner cannula in, and take out the clogged one. I don't want to just put the clogged one in the box, so the EMT offers me a glove. I put it inside the glove and ask him to put it in the box. I can clean it when I get back. No problem. Well, he didn't put it back in the box, but rather, he threw it out. Yes, he threw it out. It's not like that was important or needed. It only was part of my trach.
The drama continued as the EMTs got lost in Hartford. They didn't know how to get to Mount Sinai. Today this shouldn't be too big of a problem. Plug in the address into the GPS and voila. Nope, no GPS. Perhaps they should've referred to a map, or called dispatch to get directions, but they did none of these things. Instead, they pulled over and asked a random person on the street for directions. So, here we are in Hartford, at night, and they were pulling over to ask random people how to get to Mount Sinai. I have to wonder if they didn't secretly have a death wish. Thank goodness all was okay. Eventually they found it. I got back at 10 pm, 13 hours after I left. An infusion, which we expected to take up most of the day, but to be back by dinner, took all day and then some. This was supposed to be my "day off" from therapy. Though it wasn't much of a day off.
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