Medical Explaination of Sorts
I am not sure where to begin with what went down today... I guess all I can really say is that I am tired of the way that my hospital works. It feels like they're constantly playing games with my head and I can't take it anymore. I don't feel real support coming from my doctors or nurses. All I really feel is that a lot of them don't believe me and think that I'm making myself do this.
Trust me if I could eat like a normal person I would. Quite honestly I hate living like this. I LOVED food and my body image is pretty good if you ask me. I think I am drop dead gorgeous! Sorry that's a little arrogant but seriously I'm not that girl and I would appreciate not being treated as such.
Another big issue of the day is the lack of communication.... maybe I should just start from the top.
On April 17th I went in for a normal GI (Gastroenterology for those who don't know the term) appointment, and like most appointments at the end we were scheduled to draw labs so that my new TPN (Total Parenteral Nutrition... in short nutrition received completely through the blood which is accessed through a central line) recipe could be figured up and made. When the nurse went to draw labs my central line, which was at the time a PICC (Peripherally Inserted Central Catheter), would not draw back blood. At this time, the protocol is to insert tPA (a protein that breaks down blood clots) so that's what the nurse did not once but twice. (At this point it's important to understand that one dose of tPA can sit in a line for up to two hours before deemed "not going to work".) After hours of sitting in the GI clinic waiting for the tPA to take effect my line still would not draw blood so I was sent down to radiology for a chest x-ray and a dye study.
In radiology it became apparent that I had both a sheath on the end of my line and a kink in my line which meant that I needed a new line. Due to the fact that my mom wasn't there to sign consent I could not get a new PICC there and then but I still needed blood work so the plan was to go ahead and stick me so that I could go home. After a call up to GI this was no longer the plan. My nurses told IR (Interventional Radiology... they do procedures under x-ray) not to stick me and to just send me home and they would get home health to do it sometime in the next week and we would set up an appointment to get a new line placed the next day. I went home without any blood work that night after 9 long hours at the hospital.
Keep in mind that was all background information the real story begins right about now.
For the next week or so it was back and forth back and forth with the GI nurses and we weren't really getting anywhere. My nutritionist called the next Thursday completely irate. My nurses had told her that I refused to be stuck so it was my fault that she didn't have my TPN order written up and we (when I use this term I mean my mom and I) were noncompliant patients. First of all with my grandmother as my witness I NEVER refused to be stuck. And second we had been telling them all week that we still needed labs done and they needed to write orders for home health!
Think that's crazy? That's only the beginning.
Once blood was finally drawn and everything was thankfully okay lab wise it was decided that I would be getting a Hickman line (another type of central line... ask me about it later if interested I'm getting tired of explaining while telling my story) placed the next Thursday (May 1st). Surgery would be outpatient and done in the afternoon so I wouldn't be missing any school as I only go till 11 o'clock.
Wednesday morning we got the call. According to a certain medical professional who will not be named (if you deal with Children's Mercy GI and are a TPN patient take your guess) an outpatient surgery was absolutely preposterous because they just had to train me. Due to this person Surgery was moved to today and it would be inpatient... or so we were told.
When we arrived this morning IR had absolutely no idea about the admission. GI never put the orders in but when IR called up to them this morning to check the nurses were absolutely adamant that I had to be admitted. (they got their wish) So as my nurse down in IR reads through my charts and is trying to figure out what is going on and where I am supposed to be going after surgery she finds somewhere in my chart that I am supposed to be going to some observation unit on the 5th floor and that they are going to observe intolerance of tube feeds while up there.
Can I be the first to say WHAT?! When exactly was I supposed to be informed of this?? Um... NO I will not be making myself miserable not even two weeks before I'm due to graduate but thanks for offering? Needless to say we will not be observing that this stay.
Anyways we then continued to prep for surgery. It is important to say that before going in to get started my mom asked if they were putting in a double lumen to make sure and the answer was yes and they said that they would keep my PICC in throughout the procedure. I then was taken back and handed off to anesthesia.
What I thought was happening when I went under definitely NOT what I woke up to. The first thing that I heard was my nurse on the phone talking about my SINGLE lumen among other things. That right there was enough to set my anger rolling. Two things you must know about me are one that I do not do well with change and two that I am on both IV medication and TPN so two lumens would have been ideal. Then I realized that I no longer had a PICC line but I was sporting an IV in my right hand and not to mention I was in a lot of pain.
By the time mom walked in the room I was fuming and I could tell she wasn't very happy either. That's when my very favorite medical personnel who shall not be named walked in the room. To make a very long story that can only get longer a little bit shorter I'll put it simply, I fired her today. Oh, and GI said no to the whole observation unit and that it had to be a 24 hour stay especially since I fired the one person that could "teach" me about my new Hickman line right there and then. I complied and vascular access is teaching me instead so that's why I'm laying in a hospital bed instead of my own. On the bright side my mom and I spoke with patient advocate face to face today so hopefully something will be done both about the lack of communication in the GI clinic as well as the lady who is responsible for this hospital stay as well as the fact that I only have a single lumen's lack of a bedside manner. Maybe next time she won't come into the room when an angry teen girl who doesn't like her anyway isn't even completely awake and start talking at her instead of listening.
Sorry I really cut that short at the end but I hope that explains a little bit of why I was so frustrated earlier today.
Trust me if I could eat like a normal person I would. Quite honestly I hate living like this. I LOVED food and my body image is pretty good if you ask me. I think I am drop dead gorgeous! Sorry that's a little arrogant but seriously I'm not that girl and I would appreciate not being treated as such.
Another big issue of the day is the lack of communication.... maybe I should just start from the top.
On April 17th I went in for a normal GI (Gastroenterology for those who don't know the term) appointment, and like most appointments at the end we were scheduled to draw labs so that my new TPN (Total Parenteral Nutrition... in short nutrition received completely through the blood which is accessed through a central line) recipe could be figured up and made. When the nurse went to draw labs my central line, which was at the time a PICC (Peripherally Inserted Central Catheter), would not draw back blood. At this time, the protocol is to insert tPA (a protein that breaks down blood clots) so that's what the nurse did not once but twice. (At this point it's important to understand that one dose of tPA can sit in a line for up to two hours before deemed "not going to work".) After hours of sitting in the GI clinic waiting for the tPA to take effect my line still would not draw blood so I was sent down to radiology for a chest x-ray and a dye study.
In radiology it became apparent that I had both a sheath on the end of my line and a kink in my line which meant that I needed a new line. Due to the fact that my mom wasn't there to sign consent I could not get a new PICC there and then but I still needed blood work so the plan was to go ahead and stick me so that I could go home. After a call up to GI this was no longer the plan. My nurses told IR (Interventional Radiology... they do procedures under x-ray) not to stick me and to just send me home and they would get home health to do it sometime in the next week and we would set up an appointment to get a new line placed the next day. I went home without any blood work that night after 9 long hours at the hospital.
Keep in mind that was all background information the real story begins right about now.
For the next week or so it was back and forth back and forth with the GI nurses and we weren't really getting anywhere. My nutritionist called the next Thursday completely irate. My nurses had told her that I refused to be stuck so it was my fault that she didn't have my TPN order written up and we (when I use this term I mean my mom and I) were noncompliant patients. First of all with my grandmother as my witness I NEVER refused to be stuck. And second we had been telling them all week that we still needed labs done and they needed to write orders for home health!
Think that's crazy? That's only the beginning.
Once blood was finally drawn and everything was thankfully okay lab wise it was decided that I would be getting a Hickman line (another type of central line... ask me about it later if interested I'm getting tired of explaining while telling my story) placed the next Thursday (May 1st). Surgery would be outpatient and done in the afternoon so I wouldn't be missing any school as I only go till 11 o'clock.
Wednesday morning we got the call. According to a certain medical professional who will not be named (if you deal with Children's Mercy GI and are a TPN patient take your guess) an outpatient surgery was absolutely preposterous because they just had to train me. Due to this person Surgery was moved to today and it would be inpatient... or so we were told.
When we arrived this morning IR had absolutely no idea about the admission. GI never put the orders in but when IR called up to them this morning to check the nurses were absolutely adamant that I had to be admitted. (they got their wish) So as my nurse down in IR reads through my charts and is trying to figure out what is going on and where I am supposed to be going after surgery she finds somewhere in my chart that I am supposed to be going to some observation unit on the 5th floor and that they are going to observe intolerance of tube feeds while up there.
Can I be the first to say WHAT?! When exactly was I supposed to be informed of this?? Um... NO I will not be making myself miserable not even two weeks before I'm due to graduate but thanks for offering? Needless to say we will not be observing that this stay.
Anyways we then continued to prep for surgery. It is important to say that before going in to get started my mom asked if they were putting in a double lumen to make sure and the answer was yes and they said that they would keep my PICC in throughout the procedure. I then was taken back and handed off to anesthesia.
What I thought was happening when I went under definitely NOT what I woke up to. The first thing that I heard was my nurse on the phone talking about my SINGLE lumen among other things. That right there was enough to set my anger rolling. Two things you must know about me are one that I do not do well with change and two that I am on both IV medication and TPN so two lumens would have been ideal. Then I realized that I no longer had a PICC line but I was sporting an IV in my right hand and not to mention I was in a lot of pain.
By the time mom walked in the room I was fuming and I could tell she wasn't very happy either. That's when my very favorite medical personnel who shall not be named walked in the room. To make a very long story that can only get longer a little bit shorter I'll put it simply, I fired her today. Oh, and GI said no to the whole observation unit and that it had to be a 24 hour stay especially since I fired the one person that could "teach" me about my new Hickman line right there and then. I complied and vascular access is teaching me instead so that's why I'm laying in a hospital bed instead of my own. On the bright side my mom and I spoke with patient advocate face to face today so hopefully something will be done both about the lack of communication in the GI clinic as well as the lady who is responsible for this hospital stay as well as the fact that I only have a single lumen's lack of a bedside manner. Maybe next time she won't come into the room when an angry teen girl who doesn't like her anyway isn't even completely awake and start talking at her instead of listening.
Sorry I really cut that short at the end but I hope that explains a little bit of why I was so frustrated earlier today.
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