We've been out of the hospital for a week and a half and I still haven't written an update. As vocal as I've been about our chronic illness journey, I've found myself suddenly silent and honestly a little scarred after our last hospital stay. It wasn't the length, although a month of no sleep and stress did take its toll. It was the way that the last couple of days were handled and the way that my teenager and I were treated.
We spent the last two days under what our hospital calls a “one to one” but really it's what adult hospitals call supervision. My teenager was required to have an aide in the room with her 24 hours a day. She couldn't even use the bathroom with the door closed. Usually, hospitals will place someone under supervision when the person is a danger to herself or others. They'll also do it if they suspect the mother of Munchausen Syndrome by Proxy. Our hospital claimed they were doing it because they needed to watch my teenager to see what happened when she threw up blood which was total bullshit. She's been spitting up blood for almost two years and it's been seen by countless nurses and physicians in the hospital. It's been documented.
The whole mess started on a Monday night when Rosie threw up about twelve ounces of blood and they paged the resident in charge. This wasn't the first time this hospital stay that it happened. In fact, we were transferred to the main hospital because my child vomited blood four weeks before. I'd been frustrated that week because we were still in the hospital because of the blood even though that wasn't the reason we were admitted. I'd been asking all weekend for the doctors to tell us exactly what we needed to do to get out of there because the story kept changing. One day Rosie's feed for her NJ tube would need to be 60. The next day, we'd have to add water. All week the team of residents would order something and then change their minds. It was clear that they didn't really know what to do and honestly, I was at the point that I didn't care. We needed to go home. Unfortunately, I was told that evening that it wasn't going to happen.
“I heard you want to take her home,” said the resident. “You can't take her home like this!”
That's how our discussion started in the hallway. I explained that this had been going on a long time and that there was a direct correlation between my teen's stress level and the episodes of blood. I felt that if we could go home and get her some sleep and lower her stress that it would stop. That's when she told me she was going to put someone in the room with us for 24 hours a day and I protested.
Two years ago, we went for what we thought was a routine ENT visit after my teen started spitting up blood. We weren't allowed to leave and we're transported by ambulance to the hospital and put under 24 hour supervision for five days. It was a terrible experience. It made my teen uncomfortable. I explained the situation to the resident and reiterated that we needed to make Rosie as comfortable as possible to get better. She agreed and came to the room to speak with my daughter. We agreed to disconnect her from some monitors to make her feel more relaxed and then we went to sleep.
The next morning we had a physician change and were told that we'd have someone in with us 24 hours a day. I explained our reluctance to the team telling the story from two years ago, but she didn't care. In fact, the doctor looked at me and said, “this isn't a hotel.” I was shocked especially since I was trying desperately to figure out what we needed to do to go home. I was dumbfounded. We'd been on the same floor for a month. The nurses knew us and had spent time with us. They had to know that Rosie wasn't a threat to herself and I certainly wasn't a threat to her. This doctor was the doctor that transferred Rosie a month ago. She saw the blood and if she stopped to think about that day, would realize that I wasn't anywhere near the hospital when it happened. It was surreal.
The doctor told us that they needed to document what happens when she throws up blood. To have someone there for vitals etc. We found out later when Rosie finally threw up blood all over the floor that wasn't the case. There weren't any vitals taken. No one took her blood pressure or pulse. The aide helped me put her hair in a pony tail and the nurse wiped the floor. I'm sure they reported to the team what had happened but the one to one wasn't lifted. We had someone in the room with us all night long. Talk about uncomfortable.
I can't begin to explain how betrayed I felt in this situation. I've done nothing for the past two years to give any doctor the indication that I don't love and care about my daughter. She's done nothing but try to get healthy. We've been above-board and honest with every health care provider. The only thing that I did differently that weekend was refuse to have them call in the pain management people since we've been fired by neurology when they wouldn't see us and I asked them to respect the fact that therapy makes my teenager uncomfortable when they sent a psychologist to speak with her in the play room. And, yes, I was getting crabby. You try to sleep on a bench interrupted all night and see how you feel.
And, now how do I feel? Scarred. It's amazing that two days can completely impact the way you feel about a hospital stay. We'd had a pleasant stay until that last week. The nurses were absolutely amazing and we felt like we were going in the right direction to fix the SMA syndrome issues. The blood? I had been saying all along that it wasn't an issue for us. When we wound up staying longer, I asked them to do the scope with the ENT that we didn't get done in February, but for a month I kept asking them to stop worrying about the blood and just fix the fact that my teen couldn't eat. Too bad they didn't listen.
So, I know this is a long and rambling post. Unfortunately, that's how I feel right now. I have so many things that I want to write about after this hospital stay that will actually help people. Sadly, I'm exhausted. I still can barely function. Especially since we've been to the ER twice this week.
I will leave you with this. We have a healthcare crisis in this country that goes so much deeper than the problems with health insurance. Ask any mom of a chronically ill child that doesn't have a definitive diagnosis. We're bad people. Just ask the doctors. Not only do we have to fight them every day, they put little labels on us and our children. They leave us scarred.