Friday, I got home from Cincinnati around 7pm. They let me go as long as I got lab work the next day to make sure there were no signs of refeeding syndrome.
Refeeding syndrome is a syndrome recognized after the Holocaust when nutrition was reintroduced to victims in the holocaust who had been going without any nutrition. Basically, when the body has gone without nutrition for so long it adapts to that, so when nutrition is reintroduced sometimes the body will malfunction or reject the nutrition so instead of your vitamin levels going up gradually, they will plummet.
Friday night we started up my feeds as we were told 83ml per hour for 12 hours. Within an hour or so I woke up severely nauseated so I went into the kitchen to get Zofran, before I could get the zofran, I started throwing up in the kitchen (Luckily there was a trashcan).
We presumed it to be an isolated incident and luckily since it was just the once my tube didn’t come up, we stopped the feeds just to be safe and I went back to sleep with no problems. Woke up at 7:30am to restart feeds and try again that day.
I went to Camden Clark to get my lab work which thankfully they got on the first stick. I began getting super nauseated again but tried to ignore it because I know I needed to get that feed done. I got home luckily as the first 200ml finished up, so I unhooked so I could breathe again because when I get really nauseated I feel like I can’t breathe well, like I will take a deep breath and just throw up.
I unhooked from my feeds and ran into the bathroom and began throwing up again, not formula just stomach acid, much like the night before. My mom came in and I was upset, I asked her if I could take out my tube, to which she didn’t really reply because she knew I was just upset. So I composed myself and got up and went and took some zofran, and I noticed a pain I had about two weeks ago had began to return so I tried to take the tramadol they had given me for that.
I hoped I could keep down the medicine long enough to take effect. I laid back down in bed with my cat and started crying. I had been very emotional the last couple days and still am over things, just how overwhelming it can be to constantly be sick and not get a moment of relief.
A few minutes passed and I got up and sprinted to my bathroom again and began puking continuously. The pain got worse so I took the trash can next to my bed and laid in bed while hanging my head over the edge to throw up. I realized my tube was starting to feel like it was getting kinked up, I could feel the tube bunching up in the back of my throat, but I couldn’t stop myself throwing up. It just kept coming up both vomit and the tube.
With my NG tube, when I threw up the tube came up easily, I would throw it up in a swift heave and then just have to pull it out from my nose since it would still be in the nasal passage. With the NJ, though, it got tangled up in my throat. I started coughing and throwing up all at once and I couldn’t breathe. I started to panic a little before the tangled up tube ended up in the back of my mouth. At this point I knew there was nothing I could do to save it, and as I continued to choke on it, I pulled off the deoderm on my face and began pulling out the tube. As I pulled it slowly unkinked itself, but I knew there was no point in trying to put it back down because it would have to be completely replaced by a radiologist to get it back into the jejunal.
The pain had gotten to the unbearable point and I was still throwing up and now crying over the frustration of losing my NJ tube. I called my mom and let her know and then went to get my step dad and let him know. I ended up down in the living room floor throwing up and in pain.
My mom came home from bathing the dog and we went to the ER. My dad met us there. Usually it is my mom and grandma, but my grandma was out of town. My mom had a lot of stuff she needed to get done from where we had been out of town all week so my dad stayed with me while they got my IV started and got me zofran and something for the pain. The nausea let up but not the pain.
A doctor came in an hour later and told us that my labwork looked normal minus a kidney infection/UTI and that it was probably just my Crohns and to follow up with my GI and he was going to send me home. I told him, “I think I have a kidney stone. I had one two weeks ago. Can you do a catscan just to make sure?” He told me he didn’t think it was my kidneys but that he would run the scan for me anyway. Only to come in an hour later and admit to me that I was right and I had a kidney stone. With nothing getting the pain and vomiting under control, they decided to admit me to the hospital.
The ER was not connected to the ER though so they put me on a gurney and used an ambulance to take me to the hospital, which was not very enjoyable due to my fear of being confined/trapped/held against my wishes.
They got me into the an observation room and by 1am I was in the local hospital for the first time since I was 9. It was small. The bed faced a window that had the shades drawn. There was a small recliner chair that my dad laid in all night. There was a mirror so that I could see who walked in and out of the door since the bed was faced looking away from the door. There was a sink and a small bathroom and a TV above the windows. It wasn’t a bad hospital room, it just felt isolated and lonely. Then again I think that is just how all hospitals feel when you are constantly in and out of them.
They pushed Rocephin, fluids, and zofran over night and the next day as well. I saw the urologist Sunday who told me what I already knew, I had a kidney infection and kidney stone. I also had low potassium which they gave to me via the IV.
Sunday night was my first night alone in the hospital. My dad left late and my mom stopped in around midnight but she had to work the next day and despite not really wanting to be in the hospital by myself, my dad suggested I should convince her to go home and rest so she could get a good nights sleep.
I watched Lord of the Rings that night until almost 4am before I finally fell asleep. It wasn’t bad. It was just quiet. I know at 18 I should get better at voicing my concerns and advocating for myself in the hospital, but it is hard when all my life I have had my mother there to help with everything.
The next day they had the doctor come in and see me and decided that my potassium was good and my infection was under control and I could be sent home. The urologist didn’t want to see me for a month despite it all. I was to follow up with my GI in regards to my nutrition.
My mom and I drove home in silence. She was upset with my health and the idea of having to travel to Cinci again. I was upset as well for mostly the same reasons.
I think one of the hard things about being a dependent 18 year old is that people push you to be independent when it comes to making your own decisions regarding your health and the next steps, but I’m also dependent on other people for transportation for treatment, medication, procedures, everything. So they push me to make decisions that I can’t fully make on my own because of my dependency on others. It had been the thing most upsetting to me over the last week.
I see how frustrated my mom and step dad get over transporting me and having to put up with staying places and taking off work and finding ways to pay for the time off work and the transport. I understand there is a lot of things that make it hard for them. It doesn’t make making decisions very easy. On one hand I should make the decisions best for my health, but it’s hard to make those decisions when I see how hard it is on the people I depend on for those things.
I wish I could drive and fend for myself and that way I could handle it all on my own and be the super woman that many people see me as, simply because they do not often see the vulnerable side of me through a blog page or facebook or in a text message. They don’t see the long nights of crying over decisions, over the opportunities I have lost and missed out on. My mom says she feels I was cheated of a childhood, to which I completely understand. Depending on the day, my story will change, some days I will not feel like I was cheated and I will be extremely grateful for all the small things, but there are some nights when no matter what depression hits me and I will see all the things that others have accomplished and done that I will not get to do, or have missed out on already.
It’s been one of those nights now for a few weeks, but I’m looking up for brighter days.