While Skyping with a friend on Saturday night, I could feel my lungs getting tighter and tighter with each passing moment. There was no way I would be able to sleep with all that was going on, and knew I needed help. My parents, who wholeheartedly, no matter how tired they are, jumped up and offered to be a part of any/all my "coping mechanisms" and distractions, to keep my mind from racing at the thought that it was so painful to breathe. After going back and forth trying to decide whether or not I should go to the ER, we decided for it, hoping we could catch it before it got too much worse.
Unfortunately, when I arrived, my symptoms got drastically worse. I was immediately taken back into a room, but as I got back there, the ER doctor insisted on taking me to the Critical Care side. After starting me on different medications/machines, I knew that eventually, relief would come and that thought alone was comforting enough.
However, after several hours of being in the Critical Care, 7:00 am rolled around and it was time for a shift change. As the ER doctor who helped me throughout the night was leaving, a new one was coming in. As he came back to where I was, he asked questions, and listened to my breathing. Expecting him to say something along the lines of how awful I still sounded, he instead, complimented on how wonderful I sounded and how my breathing was fantastic.
At first I thought maybe this was an attempt at a lame joke, obviously he was being sarcastic.. right? Nope. He was serious. I couldn't believe this doctor thought I was fine? Right after, he had to leave the room but I figured eventually he'll be back. Less than a minute after he left, someone else comes in and starts unplugging my machine, taking away my meds, and starts preparing me to be taken back to the regular ER side (the not so critical side.)
So, when you give a kid his favorite toy or favorite candy, the kid is happy because he has what he wants, but when you immediately take the toy or candy back, the kid gets upset and he gets angry and it's almost like it's not the same kid that was excited a few seconds prior. Well you see, this was practically the same situation with my lungs. When the different treatment plans were started, that was the resemblance of giving a kid his favorite toy, my lungs were happy, a little relieved that it was getting help breathing. But when the doctor came in to take away the meds and my machine, that's when it was like taking candy from a kid, my lungs were about to throw a temper tantrum.
I became violently ill from such high doses of the meds, along with other unpleasant side-effects, as soon as I was taken off everything and went back to the other ER side. I convinced the nurse that I hadn't always been that way until the meds were all taken from me. Pretty quickly after, they admitted me on the floor. I was on the "general peds" floor, and not even the Pulmonary floor. When I got to my room, my respiratory therapist was already in there. Just looking at me, she knew that I wasn't okay.
She was upset and didn't understand why the doctor claimed that I was stable enough not to be in the ICU. She paged doctor after doctor and pretty soon, my room was flooded with so many of them. She called the ACT team, which is the Assessment Care Team, patients and their families can call when they are unhappy with decisions being made about the child's care. Pretty soon I had nurses, student nurses, respiratory therapists, pulmonary residents & attendings, ACT team, and the PICU team all in my room and all in agreement that I needed to go back on all the treatments that I was on before the ER doctor took them away. So to the PICU I went, where I belonged, and where I should have already been.
Sometime the next day, I had a surprise "visitor." The same doctor who came to the Critical Care and decided on his own that I could be "weaned off" my meds because I sounded "much better." Yeah him. Of course, my mom had just stepped out of the room about 20 seconds before he came in. So up to me to give him a piece of my mind! The first thing he said to me was "Why are you on this side? (with a little chuckle)" I wasn't laughing.. I proceeded to tell him that after his grand idea of "weaning me off the meds" which by the way were just stopped and not weaned.. my symptoms got worse and I had about 3 nurses and 9 doctors all in agreement that was probably the worse thing he could have done. I also threw in my two cents about how, I am an 18 year old patient. This means that when I tell you I'm hurting and I'm struggling to breathe, I'm telling you the truth, and you need to believe me. He went on about how when he listened to my breathing, he didn't hear any wheezing. Apparently, he never stopped to think that maybe he couldn't hear any wheezing because that was just how tight my lungs were. They were closing, spasming, and so tight that you couldn't hear me wheezing. A possibility that was actually what was happening. He didn't have much to say to that, besides that I was sounding better (again) but this time, I truly was.
Late Monday night I was transferred to the regular Pulmonary floor and came home Tuesday evening. I meet with my Pulmonologist on Monday morning and so I my next update will include how that appointment goes!
I usually don't ask for prayers, but if you wanted to say some for me just pray that some of the effects from some of the meds I got will subside a little bit, as I'm having a little bit of a rough time lately. (Thanks in advance ☺)
"The things you take for granted, someone else is praying for."
Unfortunately, when I arrived, my symptoms got drastically worse. I was immediately taken back into a room, but as I got back there, the ER doctor insisted on taking me to the Critical Care side. After starting me on different medications/machines, I knew that eventually, relief would come and that thought alone was comforting enough.
However, after several hours of being in the Critical Care, 7:00 am rolled around and it was time for a shift change. As the ER doctor who helped me throughout the night was leaving, a new one was coming in. As he came back to where I was, he asked questions, and listened to my breathing. Expecting him to say something along the lines of how awful I still sounded, he instead, complimented on how wonderful I sounded and how my breathing was fantastic.
At first I thought maybe this was an attempt at a lame joke, obviously he was being sarcastic.. right? Nope. He was serious. I couldn't believe this doctor thought I was fine? Right after, he had to leave the room but I figured eventually he'll be back. Less than a minute after he left, someone else comes in and starts unplugging my machine, taking away my meds, and starts preparing me to be taken back to the regular ER side (the not so critical side.)
So, when you give a kid his favorite toy or favorite candy, the kid is happy because he has what he wants, but when you immediately take the toy or candy back, the kid gets upset and he gets angry and it's almost like it's not the same kid that was excited a few seconds prior. Well you see, this was practically the same situation with my lungs. When the different treatment plans were started, that was the resemblance of giving a kid his favorite toy, my lungs were happy, a little relieved that it was getting help breathing. But when the doctor came in to take away the meds and my machine, that's when it was like taking candy from a kid, my lungs were about to throw a temper tantrum.
I became violently ill from such high doses of the meds, along with other unpleasant side-effects, as soon as I was taken off everything and went back to the other ER side. I convinced the nurse that I hadn't always been that way until the meds were all taken from me. Pretty quickly after, they admitted me on the floor. I was on the "general peds" floor, and not even the Pulmonary floor. When I got to my room, my respiratory therapist was already in there. Just looking at me, she knew that I wasn't okay.
She was upset and didn't understand why the doctor claimed that I was stable enough not to be in the ICU. She paged doctor after doctor and pretty soon, my room was flooded with so many of them. She called the ACT team, which is the Assessment Care Team, patients and their families can call when they are unhappy with decisions being made about the child's care. Pretty soon I had nurses, student nurses, respiratory therapists, pulmonary residents & attendings, ACT team, and the PICU team all in my room and all in agreement that I needed to go back on all the treatments that I was on before the ER doctor took them away. So to the PICU I went, where I belonged, and where I should have already been.
Sometime the next day, I had a surprise "visitor." The same doctor who came to the Critical Care and decided on his own that I could be "weaned off" my meds because I sounded "much better." Yeah him. Of course, my mom had just stepped out of the room about 20 seconds before he came in. So up to me to give him a piece of my mind! The first thing he said to me was "Why are you on this side? (with a little chuckle)" I wasn't laughing.. I proceeded to tell him that after his grand idea of "weaning me off the meds" which by the way were just stopped and not weaned.. my symptoms got worse and I had about 3 nurses and 9 doctors all in agreement that was probably the worse thing he could have done. I also threw in my two cents about how, I am an 18 year old patient. This means that when I tell you I'm hurting and I'm struggling to breathe, I'm telling you the truth, and you need to believe me. He went on about how when he listened to my breathing, he didn't hear any wheezing. Apparently, he never stopped to think that maybe he couldn't hear any wheezing because that was just how tight my lungs were. They were closing, spasming, and so tight that you couldn't hear me wheezing. A possibility that was actually what was happening. He didn't have much to say to that, besides that I was sounding better (again) but this time, I truly was.
Late Monday night I was transferred to the regular Pulmonary floor and came home Tuesday evening. I meet with my Pulmonologist on Monday morning and so I my next update will include how that appointment goes!
I usually don't ask for prayers, but if you wanted to say some for me just pray that some of the effects from some of the meds I got will subside a little bit, as I'm having a little bit of a rough time lately. (Thanks in advance ☺)
"The things you take for granted, someone else is praying for."