OSU Admission From Hell

So recently I was inpatient at OSU East from Saturday (6/9/18) to Tuesday (6/12/18). My feeding tube got pulled out Saturday afternoon after my Grandma’s birthday party. It was an accident by a dog; though I think it was partly because the balloon may have malfunctioned or popped I’m not entirely sure. Just that the balloon was deflated when I was coherent enough to process what I was looking at. Though obviously it really hurt being pulled out of me balloon or not and we were an hour and a half drive away from the hospital which was awful, I was crying and curled up in a ball in the back seat the whole time.

I was in a serious enough state that I didn’t have to wait in triage; they just took my vitals and then rushed me back to a room. This is when the awful wait started, I realize wasn’t really an emergent case like some other people, but still the waiting was ridiculous. I saw a resident and a doctor, both of which told me that they would get me pain medication and that didn’t happen very quickly.

The doctors also needed a special X-ray of my stomach. They put contrast through my feeding tube so my insides would light up and we would know where my feeding tube is sitting in my GI tract. And we didn’t think they would be using my feeding tube for anything in the hospital, so apparently my mom took my extension set off after my tube got pulled out. And we did need it, though we didn't know until a little while later. So my dad had dropped my mom and I off at the hospital and went home to feed the dogs. He came back to the hospital to be with us and then had to turn around and go home to get my extension set once they told us about the X-ray and come back again, to get me one of my extension sets. Unfortunately I’m one of the only people that goes to OSU East and has a feeding tube, so they don’t keep feeding tube supplies on hand.

The contrast for this special X-ray is the bare minimum of radioactive, which means I got bothered to take a pregnancy test. There’s not the slightest chance in hell that I’m pregnant. With more and more people lying about being pregnant and then suing hospitals, they aren’t as nice about giving one of the waivers to sign saying you aren’t going to sue if you end up being pregnant.

Honestly they treated me like crap. I was in a lot of pain and it took a great amount of willpower to get from the wheelchair to the bed. The nurse just strolled in saying that they needed me to get up and go to the bathroom for the pregnancy test. I felt like I was being treated like a dog, I’m not someone who can just go pee on command. I told the nurse I couldn’t sit up, let alone walk to the bathroom, on top of the fact that pain trumps any urge to pee. They offered me several other, but equally awful options, a bedpan and a bedside commode. And there’s no way I could use either one, I just can’t, I’m bladder shy.

They seemed genuinely angry I couldn’t pee just to prove I’m not pregnant. I think that they thought I was saying I’m not pregnant because my mom was right there. My mom thought it was ridiculous that they expected me to get up like nothing was wrong with me. Not to mention I'm on heavy restriction and not allowed to drive and I'm with my mom pretty much 24/7. And I just don't have any interest in sex right now anyway

Shift change happened at about 7 or 8 (maybe later I’m not sure), my new nurse came in and was asking me the usual questions, like why do you have a feeding tube, why do you have a port and so on. She asked if I was in pain, which was obviously a yes, then asked me if I had gotten anything for my pain yet. I hadn’t and she looked in my chart and discovered that I actually had morphine orders sitting there for almost 2 hours and no one gave it to me. So we got that squared away and I was feeling a bit better because they gave me a pretty big dose of it.

By this time my dad got back to the hospital with my extension set, I also signed the pregnancy waiver. they only let me have it because I told them the only way they’d be testing for pregnancy was if they took my blood. So I had the X-ray and it ended up saying what I already knew, which was that my feeding tube was just all coiled up in my stomach. I honestly think that, that test was a waste of time.

OSU also freaks out about my port every time I’m admitted, they think that it’s placed incorrectly just because it wasn’t placed at OSU. Do all hospitals do this or were they just trying to squeeze more money out of me? Every time I have to go into the ER they’re always saying they aren’t sure if they can use my port because they can’t verify placement. But usually they just give up trying to make me do the contrast port study, since they don’t listen to me but they get blood return and then leave me alone. I don’t know why it’s that big of a deal it’s so stupid.

We had to wait a really long time for the bed to become available, it took forever, by the time we got up there I was grouchy and ready to go to bed or at least watch tv. They ran my labs and took my sugar and everything to make sure I was stable enough and hung a bag of normal saline to infuse while I slept so I didn’t get dehydrated since I was NPO and obviously didn’t have feeds running.

The next morning surgery came in to see me and to see if there was any hope that they would be able to just re-thread my tube into my Jejunum. They said that they could and that they would put me on the schedule for Monday and that was basically the extent of their visit. And my nurse came in saying that my Potassium and Magnesium were extremely low and that I needed to take some ridiculously large vitamins to bring my values up. My Potassium was 2.8 and the critical value is 2.5, that’s a bit of a close call. Though my nurse turned around and said we don’t believe that’s your actual value though, it’s just too low. And I got frustrated because yes, that probably is the correct value because I have Potassium malabsorption.

I asked if it would be better if we just switched me over to a mixture of saline, potassium and dextrose. My nurse brushed me off entirely saying that the vitamins would be just fine, that I didn’t need anything via IV other than the Normal Saline that was already running. Which I know my body better than anyone and was getting really upset I just kept getting brushed off. Come nighttime I was feeling very sick and lethargic, they took my blood sugar and it was really low and that got everyone’s attention.

They gave me a bolus of glucose through my port which made me feel so much better, granted I wasn’t expecting the syringe to be the size of my arm. After the glucose and some more giant supplements the finally hooked me up to the saline mixture that I had asked about earlier in the day. If they had just listened to me that situation never would’ve happened. So that was a massive train wreck and after that I slept on and off for a while and then asked my nurse for medication to help me sleep better to go along with my night dose of morphine and thankfully I did sleep better.

The next morning surgery came and took pictures of what was dangling out of me, which was my button and a foot and a half of Jejunum tubing. I had a threaded J tube button, which is a bit of a pain but thankfully the tubing was really long because it could’ve come completely out of me. They verified the size of my tubing and everything and my mom and I spent the day waiting for them to take me down to surgery. And yet again they demanded a pee sample from me, which I was actually able to provide.

They took me down to pre-op at 3 or so, where I was judged heavily for having a feeding tube. The nurse I had wasn’t nice and she was very rude to me. I also had a nursing student following me around; I guess my case was interesting. He asked me questions about my EDS and some of my other conditions and it was really nice to educate someone.

Though the nurse that was checking me in didn’t like that he was talking to me at all, she was a really mean lady. I asked if I could go to the bathroom after she was done asking me questions and she just looked at me like that was the worst question on earth to ask. And I was trying to tell the nurse that I had a port and that it was accessed already but she wouldn’t listen to me and kept saying she was going to give me a peripheral IV because that’s supposedly what the anesthesiologists prefer. I actually learned they don’t get paid for accessing ports or something along those lines. They were going to give me a peripheral and I was freaking out then the nurse finally looked at my chest and saw my port, she was displeased. Turns out I was also type and crossed for blood because my hemoglobin was low though I never received the transfusion.

I waited to be taken back a really long time, not exactly sure how long because there weren’t any clocks down there. Since I was an add-on to the surgery schedule almost everyone had left, and I think that may have been the reason why that nurse was treating me so awfully. I understand they’ve had long days and they’re tired but that’s no excuse to take it out on me. It’s not like I have much control over these things. Finally they were ready for me and they gave me some Versed and the last thing I coherently remember is scootching over onto the OR table.

Waking up wasn’t nearly as rough as it usually is, they used a different kind of sedation I think. I was also in minimal pain because they gave my pain meds as a part of my sedation. So everything was fine and dandy, we went up to my room after I was mostly coherent and I was actually supposed to leave after that.

 I went to the bathroom when we got upstairs, and discovered that the button wasn’t a J tube button like all my paperwork said it was going to be, but a G/J button. I don’t particularly like G/J tubes in general and would prefer not to have one. I started getting upset because this is not what I signed the consent for. And it’s not okay that people are taking it on themselves to make decisions for me. We originally thought they were still going to reuse my J tube but it was too kinked up to use again.

I was afraid and still am afraid that without the cap on my G port that stomach contents will leak out and go everywhere and my mom was furious. I signed the consent to have another J button placed not a G/J button. The nurses got ahold of the on call surgeon, who thought we were ridiculous they told us just to cut the cap, that it doesn’t really matter or just don’t touch it and it shouldn’t do anything. Well we weren’t inclined to believe them so I chose to remain in the hospital until the next day when surgery could come and see me again. I was livid yelling at my nurses because they didn’t really want to help me either and really I hit my breaking point. I can only stay calm and strong for so long until I snap. I know it wasn't their fault that this happened and I apologized after I calmed down, I just wish someone would understand things from my point of view. 

The next day rolls around and surgery shows up bright and early wondering what my problem is. My mom and I keep telling them that this wasn’t the tube I signed the consent for. Their only comebacks were “well it’s a working tube” and “other people with Gastroparesis vent and drain their stomach’s to relieve pressure and drain bile to lessen nausea.” While I could probably learn to be okay with venting and draining my stomach, personally I just don’t want to. I’m also not okay with the fact that they just lumped all people with Gastroparesis together and that’s unfair. No two cases of Gastroparesis are the same just like any other illness. She was basically saying that my Gastroparesis must not be that bad if i don't need/want to vent and drain my stomach.Then she admitted that G/J buttons were all they in their supply. So if they knew that all they had were G/J buttons, I don’t know why they just couldn’t tell me and then order a J tube and wait for it to be delivered.

Surgery didn’t care at all it just kept circling back to G/J tubes being the only one’s they had and that it was a working tube so I shouldn’t be upset about it. Eventually I gave up trying to reason with her. I ended up going home that afternoon and we cut my cap into two separate pieces so the G port will always be covered.

Right now we’re still trying to check with my original surgeon (who was away on family matters through all of this) to make sure this tube is the right length that I need. We have also been talking to the complaint department or the Ombudsmen Office about how I was treated during my stay. The nurses didn’t listen to any of my concerns, like when I was concerned that I was receiving only normal saline instead of my usual cocktail that keeps me stable when I’m NPO. No one really cared that I received the wrong feeding tube, granted no one really wanted to come near me because I was yelling. I started ranting and getting progressively angrier because all the nurses did was stare at me, then look at my mom as if she was actually going to stop me from yelling.

So for now we wait and I try not to do anything to aggravate my stoma as it heals again.