So....

I guess I ended at the nurse from Hallafax....I won't use the word I have especially saved for her. I believe all of this took place on September 16th and 17th. The next 17 days of my life I must say I do not really remember. There were so many drugs in my system I couldn't function. They had me on a Demerol pump 25 mg every 15 minutes, which made me itch so there is benedryl IV 25mg every 6 hours, the combo made me really sick to my empty stomach so they gave me Phenergan IV 25 mg every 4-6 hours depending on how much I was dry heaving. It was a very very long 17 days. Most of the time I would lay unresponsive or I would get SO hungry I couldn't stand it but every bite of food I ate I regretted it, so I wouldn't eat! One particular day I didn't wake up ALL day I slept my kidneys weren't putting anything out because the only fluids I was getting was IV and my IV's were blowing left and right because of the lack of nutrition. Just remembering how hard it was on my parents brings tears to my eyes! They mean the world to me, I wouldn't have made it without them. Alright, back to the story. So, they weren't able to put the fluids to me like they needed to and the feeding tube milk was making me worse not better. The day I was talking about where I slept all day and nothing was being put out and nothing was going in, this was a Tuesday. On this Tuesday a minister friend of my fathers came to the hospital bring a bunch of food for my parents, steaks from a very expensive steak house in Downtown Nashville TN, along with the food he brought a very powerful man of God he prayed for me and told my parents that things would be better! So they held on to their faith yet again! The next day, Wednesday in case you weren't keeping up, lol, was a good day! I had been able to eat, I had been able to go to the game room which I hadn't been to in a few days, it was a good day! They decided not to put the tube back down because I had improved so much. Now I was so excited about that. There were dipping dots on the basement level of Vandy, my all time favorite ice cream! So, after much talking and begging I convinced mom to let me go down to the basement with her to get some dipping dots. So she and I went down to the basement got me strawberry cheesecake, my favorite, on the way back to 6 North we went. The elevator dinged, I got off and mom started pushing my IV pole off the elevator, well before she could get my pole off the elevator hump thing the doors shut and took a non stop flight to the 11th floor, the heli-pad! So, I am on the 6th floor with my dipping dots and she is on the 11th floor with my IV pole. By instinct I caught my IV before it came ripping out of my arm and I was fine, and I knew mom was fine. But you see she didn't know I was OK and they had been having such a horrible time with IVs she just KNEW it had destroyed my left arm. So she FREAKED! I was just standing there with my left arm suspended in the air and I had opened my dipping dots (with my teeth) and was holding them in my left hand and eating them with my right, just patiently waiting for someone to walk by or the elevator to come back down. Finally a nurse walked by and said hello and said a very calm how are you. I replied o I am doing great just waiting on my IV pole to come back, she replies OK well have a nice day, got about 10 feet past me turns around and says O MY WORD, takes off sprinting to the nearest nurses station grabs some supplies and come unhooks me all while I just stand there eating my dipping dots. My mom and the IV pole finally returns and she sees me standing there and just melt into the floor in tears of relief! It is a very funny story now but it sure wasn't funny then! We were released that time a couple days later and I got to come home. For about 4 days!

That's Life

Well I am proud I made it to 2002 ! In the first part of 2003 I don't really remember the dates I began to have eating issues it would hurt me so bad to eat ANYTHING! So they put me in the hospital in the beginning of that year in Memphis TN where I had found my new GI doctor, Dr. Lazar, her husband was the one who did my ear surgeries. I was released with pills to help with the pain and be able to eat. But it just did not seem to do what I needed! So, on over into the year I started my Junior year at a school in Camden TN, one of my best friends and I drove everyday we had the most fun! But on Sept 16th of 2003 I woke up in excruciating pain, I couldn't eat, I couldn't think. It was scary! So I got myself together enough to try to go to school because I was bound and determined to graduate on time in spite of my medical problems! So I got there and I got SO SICK I had to have my mother come and pick me up, she took me straight the hospital where they gave me a shot and we headed off towards Memphis. That day I saw my Dr. Lazar she put me in the hospital at Lebonour in Memphis! I was there for ten days and in those ten days I had 3 upper GI's with lower bowel follow throughs each consisting of drinking the liquid chalk 16oz at a time and 5 and 6, 16 oz cups an upper GI. I also had multiple cat scans with and without contrast,and I even had a colonocopy which I woke up in the middle of....Now that was FUN!<-----just kidding not so fun<----so after being there for ten days not eating because of all the test I wasn't allowed to eat for like 72 hours because of back to back fasting test. They let me go home. My best friends grandmother had died on the Friday before I got to come home on that Sunday, So on our way home from the hospital I insisted they allow me to go to the funeral home to be with my best friend. My parents let me. During the funeral I go SO sick it was horrible to I left the funeral and went into a side room until my father was able to leave the platform where he was playing music and singing in the funeral. From there I was able to get a little food down enough to take my medicine and I fell asleep finally, after my body was SO exhausted from the pain and the crying and the emotional junk it was dealing with. I was able to stay of of the hospital for I believe 4 days. I then lost the ability to eat, or think I was losing weight at an alarming rate so my mother got in contact with my surgeon Dr. John Pietsch at Vanderbilt children's hospital in Nashville TN, He told her to bring her in ASAP and it would be a direct admit! That night was the worst night I have in recent memory, I got there and they started poking me with I didn't mind but by the 3rd try for an IV you get a little frustrated. Finally they got Harold, who stuck me twice one time the rest of the time he got it on the FIRST stick. He got my IV started they started a Demerol drip and lot of fluids and then decided to put a feeding tube down my throat. The lady who came in a was going to put the feeding tube down me she came in I dealt with the pressure the pain and the aggravation of having that thing stuck down your nose, and within only a couple of minutes it was over. They started me on that Thick, milky, smells like a nursing home formula with made me DEATHLY ill. As soon as that milk hit my stomach it TORE me up, I was miserable! And I was in a two sleeper room so the bathroom wasn't always accessible. So, the strength I had was gone within a matter of a couple hours! Then at about four am a very very dumb orderly come in there jerked me around pulled my feeding tube half out which hurt so bad it brought tears to my eyes, and she was just pulling on this cord and unplugging this acting like she was in such a rush to get me to yet another cat scan, she just couldn't waste the time to actually transport a patient without harming them! Finally after about an hour in the CT scan and freezer as I liked to refer to it, I was able to go back up and lay down on that trauma room bed which I knew was going to feel like heaven! I got up there laid down and I was about to fall asleep when my nurse, I shall call her Helga, I don't remember her name but I just know she was big and I wasn't and she was not so much on the caring side either. So, she runs in there and says you tube is coming out and proceeds to take her forefinger and her thumb and grasp that tube and start SHOVING it back down my throat, saying swolllow swollow swollow, tears were being forced from my eyes it hurt SO bad, I was very thankful when her shift ended!

Life Goes On

After we moved to TN from MS I changed orthopedic doctors, I went to one in Memphis for a couple years. Until my sister had a four wheeler wreck and broke her back in three places and they sent her to Vandy, which is where I met my favorite Dr. Gregory Mencio. I love this man...LOL He then became my "back doctor". He took me out of the brace, which is one reason I LOVE HIM, He told my parents and I that there was no need in wearing it anymore because of two reasons. Those reasons were, 1. I wasn't keeping food down at all and had gained only a few pounds in several years, I weighed only 45 at 9 years old, and 2. it wasn't slowing the severity of my curve down. So I walked out of that office in love! lol He told me that I would probably have to have surgery but they wanted to wait as long as they could so I would have some time to grow! (this all took place about 1998) I seen him every 6 months until January of 2000. In January of 2000 my curve had progressed to a 65 degree curve and they could no longer run the risk of this damaging my "good lung". So 3 weeks later I had my first back surgery on February 9th, 2000 I was 12 years old! I went to sleep at 4'9 and woke up at about 5'0 to 5'1 I gain about 3 and a half to 4 inches in 4 hours. That was the most painful experience that I could remember! I laid flat on my back in the hospital bed for 3 days because I couldn't stand for anyone to touch me, breath on me, or walk near my bed. I could be asleep and feel someone walk into my room, because of the vibrations on the floor. It was horrid! During this surgery they inserted 2 metal harrington rods into my back they measured 12 inches and the other was 11 and a half inches. I recovered relatively quickly from that surgery! I had the very best posture after the fact! Then later in that year my GERD and Acid Reflux began to worsen and nothing was helping I finally found me a doctor in Jackson TN his name was Dr. Laman I liked him as well! He put me on Prevacid 15 mg twice a day. I believe that medicine was made in heaven, for the first time in my life I didn't have heartburn. But this wonderful medicine only worked for a few months and he began to have to try all other kinds, nothing was helping anymore. So he did an endoscopy to look down my esophagus and sure-enough I had erosions in my esophagus and my esophagus never closed at the bottom so everything I ate went to my stomach turned into acid and came RIGHT back up, they just knew i had pre-cancer cells in my esophagus called Barrett's Esophagus. Through prayer it was not it was just REALLY REALLY close, to close for comfort. So Dr. Laman sent me to another man I love very much, Dr John Brooks Pietsch! Dr. Pietsch did my first nissen on March the 14th of 2001, he had to do an open nissen because I had to much scar tissue to do a laproscopic one. A surgery that was suppose to last only an hour ended up lasting 6 because he had to work through mounds of scar tissue and adhesions. For one very long month after surgery I was not able to eat solid food because it would run the risk of destroying all the work he had done. What work did he do you ask? He wrapped a portion of my stomach muscle around my esophagus and repaired my hiatal hernia. After the month of no solids I was perfect NO MORE heartburn, no more zantac, reglan, nexium, prilosec, or prevacid. I felt GREAT I started gaining weight. Which was Wonderful I still didn't weigh what I was suppose to but I weighed like 75-78 lbs. It was heaven! In April of 2001 I was still having horrible ear infections in my right ear, so they sent me to Dr. Randy Lazar in Memphis who put the tubes in at 3, the tubes never fell out of my right ear. So he put me to sleep to remove my ear tube. Then they had to do another Endoscopy because my esophagus was TOO tight, they went through my throat and stretched it a little. I think in 2001 I was put to sleep 7 times. In 2002 I started having some problems breathing and my back was starting to hurt real bad again, because of the many years of scoliosis. So on December 31st of 2001 I had my second back surgery performed by Dr. Gregory Mencio. He went in and removed 6 inches from 6 of my ribs on the right side to give my lung a little room to expand. In 2002 I began to have GERD again that wasn't able to be controlled with medicine, so they did another upper GI, I had to have upper GIs every year from the time I was a baby until I was about 7 years old and then I have had to have the periodically since then as well. On the upper GI they were able to see that the "nissen" had come unattached. They scheduled my second open nissen fundoplycation for Dec 11, 2002 one week after I was in the office(it all happens so fast). This surgery was successful, again it took about 4 hours rather than 1 hour to perform because of the scar tissue. There is so much to my life story......lol I need to write a book.

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Life Keeps Going

After my first surgery at nine hours old they told my parents if I could make it for 72 hours they MIGHT start talking about my survival. My mother and father were devastated! My mom was still in Oxford a couple hundred miles away in the hospital, she didn't get out of the hospital for 5 days after I was born because of the C-section. My father and grandfather are both ministers and they began calling everyone they knew, which was a lot of people for prayer. Before I was 24 hours old most of America and several surrounding countries knew of the "Wilson" baby who was hanging on by a thread! LOL They had put me on 100% respiration and 100% oxygen shortly after I was born. I am not for sure how long I was on that to be honest, (I don't remember) my mother would though! When I was three weeks old I had to have my second surgery, they had to go in a do a bowel resection because my intestines had kinked when they brought everything back down to where it was suppose to be. I was a couple of weeks old when I was able to digest ONE cc of milk! and 5 cc's make a teaspoon ( I was a big eater)! They allowed me to come home at 5 weeks old! My mother and father watched me like a hawk along with the rest of my family ( I didn't get to see daylight until I was 4 lol)! I was in and out of the doctors with ear infections and upper respiratory infections and all kind of things that made me ill, and my mother not unlike the rest of moms in the world she was VERY protective so I sneezed and she took me to the doctor office! I was on iron and raglan and all kinds of other medicines for a very very long time! When I was 6 months old I weighed only 9 lbs (I was a fatty lol), they diagnosed me with failure to thrive and put a feeding tube down my nose I wore that until I was about a year old! Before they put that down my nose I projectile vomited everything I ate. When I was eleven months old I had my third major surgery adhesions had completely closed off my intestines so they went in and did a 2nd bowel resection. That was my last major surgery for awhile. During the first year I was diagnosed with scoliosis as well. I was about 3 I guess when they had to put ear tubes in both ears, take my tonsils out, put windows in my sinuses and remove my adenoids! They did all of these in two separate surgeries! I was 7 years old when my orthopedic doctor , Dr. Hamilton, told me I was going to have to wear a back brace for the rest of my life because my scoliosis was progressing at an alarming rate! Talking about being devastated I remember crying that entire day! He told me that I may not have to have surgery if I wore this brace 23 hours a day forever. I asked him then why he couldn't just do the surgery, because I was never afraid of surgery! I also remember the day I got fitted for my brace, the man who did the cast for my brace only had one arm his other arm and hand was prosthetic. eventually I got over having to wear the back brace, I told myself it was better for me and I could just deal with it and I was the cool one on the play ground because of it (right lol)! I remember that brace to this day it was made of REALLY hard plastic and two metal pieces with padding came over the shoulders and the back had two screws. I had to learn to put this on and take it off myself!<-----this was my first one! When a few months went by and there was no change the progression of my curve was speeding up, so they decided to put me in a Milwaukee brace.....now this one was not half as comfortable as my first, and the first wasn't comfortable at all! This one was also made of a hard plastic but the plastic was only over my hips and lower stomach, then a metal bar thing, was attached and went right up the center of my chest there was a piece of plastic that was about the size of a coaster, it curved inward toward my stomach, and the bar went on top of it and went up into a circle that went around my neck. The piece of plastic the size of a coaster put a lot of pressure on my hiatal hernia, which caused me to vomit everything I ate. I already had HORRIBLE heart burn all the time in spite of medicines but this literally kept me from keeping anything I ate down, I was about 8 years old and didn't weigh but like 30-38 lbs. On the back of the neck circle was a screw that had to be tightened and two bars came down that which hooked into the piece of plastic that was around my pelvis. I wore this brace for 3 years day and night yeah it was real fun! If the back brace wasn't enough, because of all the medicines and things I had to take as a baby my eyesight began to get worse. So, when I was 5 they fitted me with glasses so I have worn glasses for almost 17 years.

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Life Begins

Hello Everyone! My name is Kristen Brooke, but I go by Brooke. I was just old enough to talk when I learned that phrase, my parents had said it so many time I just thought that is what you were suppose to say when you saw a new doctor or nurse. I am 21 years old and I live in TN. I was born with a diaphragmatic hernia which affected the left side of my diaphragm. My intestines and spleen and several other organs pushed through the hole and formed where my left lung was suppose to be. My left lung was the size of about a quarter or half dollar when I was born. All of those things forming in the left side of my chest cavity it pushed my heart and spine to the right which decreased the development of my right lung! My mother and father did not know I was going to be born with CDH and neither did my mom's doctor or my doctor. I was born at 2:03am on July 16th, 1987 I was never weighed they think I weighed about 8 lbs and they didn't even estimate my length. When I was born I immediately began to go into respiratory distress, and they put a ventilator tube down my throat in order to stabilize me for my first helicopter ride! My mother had to have a C-section so she was still under the anesthesia when she got to see me for a grand total of about 3 minutes before they put me on the helicopter to go a couple hundred miles to a university hospital. They airlifted me from Oxford MS to Jackson MS, I had my first surgery when I was 9 hours old, which was performed by a Dr. Richard Miller(The worlds best pediatric surgeon). The doctors did not give me any hope at all, they told my mother and father that I would die without surgery and they couldn't promise ANYTHING with surgery! Little did they know I was a fighter and I wanted to live!

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