Hospital
I haven't updated in a long time. Two reasons. First, I was in the hospital. Second, getting over the most horrifying experience of my life.
I was in the hospial from April 24th through July 21st. I remember April 24th fairly clearly. We went over to the Schaeffers' and had dinner. We were going to play a "Who Wants to Be A Millionaire" game but instead started watching "Hero" and got hooked. I remember the movie very clearly, it was very good. I remember the plot. That is when my memory stops. I don't remember anything until June 5th.
Basically, the night of April 24th I was feeling a bit under the weather. I wasn't even that sick. I suppose I was a bit out of breathe--but as I said, I don't have any recollection. My mom says she had been asking all evening if I wanted to go to the hospital, and sometime after we got home I finally said yes. I walked into the emergency room at Shady Grove. I brought a Sudoku book. I was doing Sudoku. I stayed in the ER there until the early morning. By then I could no longer breathe and they were using an Ambo Bag to breathe for me and keep me alive. Shady Grove Adventist Hospital decided they could not care for me and contacted Johns Hopkins Hospital in Baltimore. They arranged for me to be helicoptered over right away. My mom says some doctors came in and asked if I wanted to be intubated (intubation: placing a tube into the trachea when a patient cannot breathe themself) for the flight. My mom remembers being surprised and saying "No, why?" and then asking me. She says I replied, "Yes, I want to be intubated-- I can't breathe." She tells me they knocked me out right then and there. Sometimes I think I can remember the sound of the helicopter blades. But I am not sure if this is something made up.
I arrived at the Pediatric Intensive Care Unit at 2 or 3 AM April 25th. My dad rode in the helicopter with me. I had sepsis (wikipedia entry) and pneumonia in my only good lung due to a massive strep infection. My dad says he remembers trying to get me to look at a dog accross the room. I suppose I was semi-awake at this time. I couldn't talk due to the breathing tube but I wrote many things down. We have some notes from that first day. I wrote something like "I thought that was the nurse feeding me green sponges, but it was Renee." (I was not allowed to have water while on the ventilator, so they would give me these green sponges on a stick soaked in water).
The next day I was moved to the adult Medical Intensive Care Unit (MICU) after a bed had opened up. Even though I am 17, Wegener's Granulomatosis is an adult disease, and my doctors are adult doctors. For the first two weeks they did not feed me any food. I was delirious and thrashing around due to a very bad reaction to a medication called Versed. Versed is used to cause amnesia. The doctors kept increasing the dosage because they believed I was undersedated, causing even worse reactions to the drug. This went on for two weeks and they could not feed me because of this reaction.
After two weeks they placed a feeding tube. They also performed a tracheostomy because a breathing tube left in the throat for more than two weeks will damage the vocal cords. By this time I believe the infection was mainly gone. My doctors went to work on my bad lung so if I ever got sick again, I would have two lungs. Part of the reason this episode was so intense was because I only had one functioning lung. So they started messing with stents in my left lung, trying to open up airways closed down since October 2005. All this activity caused the Wegener's to flare. I needed to be streated with more corticosteroids. I had high doses of intravenous solumedrol. This, in combination with some of the drugs used to sedate me, made me extremely combative. I pulled out my central IV line that was sutured into my neck. I pulled out my entire trache. Twice. I pulled out my feeding tube many times. My dad says he remembers a meeting the doctors held; "We can't treat Sarah-- she's pulling everything out!" A lot of the time they tied my wrists to the bed. Occasionally they put these big white mittens on my hand. My mom was always pestering them to untie me. They also had a "sitter" in the room at all times to watch me. This is a person trained in basic medical care. What they mainly did was try to prevent me from pulling out tubes (didnt help that much). I sometimes had IVs put in my leg. I had an arterial line in my left wrist. They had to take off my watch for that and my parents say I was upset about that.
I had my backpack on the floor with things I brought from home. Knitting, a book by Terry Pratchett, my cellphone. My mom says ever week or so we would take out my backpack and I would look through it. Even though I wasn't well enough to do anything with my things, I liked to look at my stuff.
My mom took a few pictures of me. I don't know why. Here is a particularly disturbing one from May 21st. Drugged much?
As a result of the infection, I developed something called Bronchiolitis Obliterans Organizing Pneumonia (BOOP). It mimics pneumonia, but does not respond to antibiotics. This helped to extend my stay in the MICU. During the entire stay also, the ventilator was blowing holes into my good right lung. I had 5 or 6 chest tubes. Chest tubes are what they sound, a tube stuck in your side and hooked up to a suction to pull out air or fluid and basically keep you breathing. Sometime during my stay I had an open lung biopsy. Of course I didn't find this out until much later when, wondering why I was numb, I found a three-inch-long scar.
My memory starts more or less with June 5th. My mom walked into my hospital room. I remember feeling like it was the first time I had seen her in ages. I was so happy. Everything suddenly seemed real. I kind of woke up from dreamworld. In reality, my mom and my dad had been coming EVERY SINGLE DAY alternating off and on since I was admitted. I couldn't talk because of the trache, but I didn't start mouthing words or trying to communicate until the end of June due to a medicine called Haldol they prescribed because of my hallucinations. It didn't work anyhow. I remember a lot of things from June. That was when I was kind of waking up more. When I first became really conscious, I had no idea why I was in the hospital. As I said, I had no memory of Apr 24th on. My dad explained about the strep. And my mom explained that the amnesia was caused by the drugs-- she assured me that many of the times I have no memory of, I was awake and conversant. My dad says I told him to go online and print out some sudoku and that I actually did some for a while. I was really upset about the memory stuff. I kept wondering if I would forget the conversations I was having. It turns out I didn't forget much more, so that was OK.
By July I had been moved to a step-down unit with a bigger room. When I first woke up, my arms and legs were very skinny. I had lost a lot of weight and a lot of my muscles. and could not stand or sit up. In fact, I couldn't even move my toes when someone asked or move my legs. Gradually I started to stand, first with two people, then one, and then with a walker. I used a walker to walk up and down the halls. I started chemotherapy for the Wegener's. I had the central IV in my neck replaced with a PICC (arm IV). Eventually, I went home.
I was veryveryvery happy to go home. Glad to be alive. So happy to escape the drugs, the nitemares, the neverending twilights and dreams. It was horrible. Sometimes I wouldn't want to shut my eyes because I would see people in the room or feel like I was spinning.
I did have to go back to the hospital for a three day stay in August for a bronch. I have had three bronchs since my release and have another scheduled for September. Right now I have two stents in my left lung. Nothing will erase the memories of those nitemares. I have an intense fear of getting sick again. I'm trying not to share food, wash my hands, etc. I can't walk for very long, but my muscles are developing again. I'm on oxygen all the time. It's tough to get around, but doable.
Pshhhhhh. Real long. But I felt like I should write it all down. Somewhere.
I was in the hospial from April 24th through July 21st. I remember April 24th fairly clearly. We went over to the Schaeffers' and had dinner. We were going to play a "Who Wants to Be A Millionaire" game but instead started watching "Hero" and got hooked. I remember the movie very clearly, it was very good. I remember the plot. That is when my memory stops. I don't remember anything until June 5th.
Basically, the night of April 24th I was feeling a bit under the weather. I wasn't even that sick. I suppose I was a bit out of breathe--but as I said, I don't have any recollection. My mom says she had been asking all evening if I wanted to go to the hospital, and sometime after we got home I finally said yes. I walked into the emergency room at Shady Grove. I brought a Sudoku book. I was doing Sudoku. I stayed in the ER there until the early morning. By then I could no longer breathe and they were using an Ambo Bag to breathe for me and keep me alive. Shady Grove Adventist Hospital decided they could not care for me and contacted Johns Hopkins Hospital in Baltimore. They arranged for me to be helicoptered over right away. My mom says some doctors came in and asked if I wanted to be intubated (intubation: placing a tube into the trachea when a patient cannot breathe themself) for the flight. My mom remembers being surprised and saying "No, why?" and then asking me. She says I replied, "Yes, I want to be intubated-- I can't breathe." She tells me they knocked me out right then and there. Sometimes I think I can remember the sound of the helicopter blades. But I am not sure if this is something made up.
I arrived at the Pediatric Intensive Care Unit at 2 or 3 AM April 25th. My dad rode in the helicopter with me. I had sepsis (wikipedia entry) and pneumonia in my only good lung due to a massive strep infection. My dad says he remembers trying to get me to look at a dog accross the room. I suppose I was semi-awake at this time. I couldn't talk due to the breathing tube but I wrote many things down. We have some notes from that first day. I wrote something like "I thought that was the nurse feeding me green sponges, but it was Renee." (I was not allowed to have water while on the ventilator, so they would give me these green sponges on a stick soaked in water).
The next day I was moved to the adult Medical Intensive Care Unit (MICU) after a bed had opened up. Even though I am 17, Wegener's Granulomatosis is an adult disease, and my doctors are adult doctors. For the first two weeks they did not feed me any food. I was delirious and thrashing around due to a very bad reaction to a medication called Versed. Versed is used to cause amnesia. The doctors kept increasing the dosage because they believed I was undersedated, causing even worse reactions to the drug. This went on for two weeks and they could not feed me because of this reaction.
After two weeks they placed a feeding tube. They also performed a tracheostomy because a breathing tube left in the throat for more than two weeks will damage the vocal cords. By this time I believe the infection was mainly gone. My doctors went to work on my bad lung so if I ever got sick again, I would have two lungs. Part of the reason this episode was so intense was because I only had one functioning lung. So they started messing with stents in my left lung, trying to open up airways closed down since October 2005. All this activity caused the Wegener's to flare. I needed to be streated with more corticosteroids. I had high doses of intravenous solumedrol. This, in combination with some of the drugs used to sedate me, made me extremely combative. I pulled out my central IV line that was sutured into my neck. I pulled out my entire trache. Twice. I pulled out my feeding tube many times. My dad says he remembers a meeting the doctors held; "We can't treat Sarah-- she's pulling everything out!" A lot of the time they tied my wrists to the bed. Occasionally they put these big white mittens on my hand. My mom was always pestering them to untie me. They also had a "sitter" in the room at all times to watch me. This is a person trained in basic medical care. What they mainly did was try to prevent me from pulling out tubes (didnt help that much). I sometimes had IVs put in my leg. I had an arterial line in my left wrist. They had to take off my watch for that and my parents say I was upset about that.
I had my backpack on the floor with things I brought from home. Knitting, a book by Terry Pratchett, my cellphone. My mom says ever week or so we would take out my backpack and I would look through it. Even though I wasn't well enough to do anything with my things, I liked to look at my stuff.
My mom took a few pictures of me. I don't know why. Here is a particularly disturbing one from May 21st. Drugged much?
As a result of the infection, I developed something called Bronchiolitis Obliterans Organizing Pneumonia (BOOP). It mimics pneumonia, but does not respond to antibiotics. This helped to extend my stay in the MICU. During the entire stay also, the ventilator was blowing holes into my good right lung. I had 5 or 6 chest tubes. Chest tubes are what they sound, a tube stuck in your side and hooked up to a suction to pull out air or fluid and basically keep you breathing. Sometime during my stay I had an open lung biopsy. Of course I didn't find this out until much later when, wondering why I was numb, I found a three-inch-long scar.
My memory starts more or less with June 5th. My mom walked into my hospital room. I remember feeling like it was the first time I had seen her in ages. I was so happy. Everything suddenly seemed real. I kind of woke up from dreamworld. In reality, my mom and my dad had been coming EVERY SINGLE DAY alternating off and on since I was admitted. I couldn't talk because of the trache, but I didn't start mouthing words or trying to communicate until the end of June due to a medicine called Haldol they prescribed because of my hallucinations. It didn't work anyhow. I remember a lot of things from June. That was when I was kind of waking up more. When I first became really conscious, I had no idea why I was in the hospital. As I said, I had no memory of Apr 24th on. My dad explained about the strep. And my mom explained that the amnesia was caused by the drugs-- she assured me that many of the times I have no memory of, I was awake and conversant. My dad says I told him to go online and print out some sudoku and that I actually did some for a while. I was really upset about the memory stuff. I kept wondering if I would forget the conversations I was having. It turns out I didn't forget much more, so that was OK.
By July I had been moved to a step-down unit with a bigger room. When I first woke up, my arms and legs were very skinny. I had lost a lot of weight and a lot of my muscles. and could not stand or sit up. In fact, I couldn't even move my toes when someone asked or move my legs. Gradually I started to stand, first with two people, then one, and then with a walker. I used a walker to walk up and down the halls. I started chemotherapy for the Wegener's. I had the central IV in my neck replaced with a PICC (arm IV). Eventually, I went home.
I was veryveryvery happy to go home. Glad to be alive. So happy to escape the drugs, the nitemares, the neverending twilights and dreams. It was horrible. Sometimes I wouldn't want to shut my eyes because I would see people in the room or feel like I was spinning.
I did have to go back to the hospital for a three day stay in August for a bronch. I have had three bronchs since my release and have another scheduled for September. Right now I have two stents in my left lung. Nothing will erase the memories of those nitemares. I have an intense fear of getting sick again. I'm trying not to share food, wash my hands, etc. I can't walk for very long, but my muscles are developing again. I'm on oxygen all the time. It's tough to get around, but doable.
Pshhhhhh. Real long. But I felt like I should write it all down. Somewhere.