Joshua Eric Patrick
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Logan & Joshua
Hi! My name is Joshua Eric Patrick. I am 10 months old. I am definitely a blessing to my family but in my 10 months I have given them quite a few scares.
In January of 2000, after a few months of trying, my mom found out that she was pregnant. She and dad were very excited about this great miracle. In March, at 11 weeks pregnant, mom had her first ultrasound. My oldest sister, Jayne-Anne, was present for the big event. The technician had a very strange look on her face. Mom said jokingly, "What is wrong? Do you see 2?" Her response was, "YES!" From that day on mom and dad worked hard to prepare for twins. I already was going to have an older sister, Jayne-Anne, and an older brother, Matthew. Now my sister and I would be joining the family.
Mom's pregnancy was like any other pregnancy. She had borderline gestational diabetes but all else went well. She carried us full term. On October 11, 2000 at 38 weeks pregnant, mom gave birth to Logan Caroline Patrick and ME by C-section. My sister was born 1 minute before me weighing 7 pounds. I was 5 pounds. All looked great with both of us. Our apgar scores were 8 and 9. Mom went to recovery and dad went with us to get cleaned up. When mom came out of recovery, dad was waiting for her with tears in his eyes. He told her that our pediatrician had been examining us and that I had a cleft palate. Mom was not upset because she knew that a cleft palate could be fixed and all would be well. My pediatrician kept telling my parents that he was sorry. At this time, no one knew how horrifying the next 3 months would be except my pediatrician.
I was sent to UNC Hospital immediately. Mom did not even get to hold me. In Chapel Hill I was diagnosed with Pierre Robin Sequence. I have multiple birth defects including: Tracheomalacia, Cleft Palate, Micrognapthia, and breathing problems. During this visit to the hospital, I had to have a feeding tube because I could not eat by mouth. On October 30 I came home.
I was home for 2-3 weeks before I contracted a cold. I had had a hard time growing and thriving during this time. I was having boughts of apnea due to my oversized tongue rolling back and obstructing my airway. I had to be rushed to our local hospital where I was stabilized and transported to UNC once again. I was diagnosed with RSV and had to spend 3 weeks in the hospital. A tracheostomy was mentioned to my parents but they did not want to talk about something so drastic. A few days before Thanksgiving, I went home.
I remained at home a bit longer this time. Mom and dad were hopeful that I would begin to grow and alleviate the breathing problem that I was having. On December 22, 2000 I stopped breathing. My eyes were fixed and my heart stopped. Mom was alone with the 4 of us and she was horrified. Mom performed CPR and my big sister called 911. Within 15 minutes an ambulance was taking me to the hospital. Mom had me breathing by this time. I was once again sent to UNC where I stayed for 1 week while mom and dad discussed with experts what the next step would be.
On December 27, 2000, I had surgery to have a tracheostomy. I was in ICU on life support for 3 weeks. When I finally was breathing on my own, I was put on the floor. Mom and dad now had to learn how to take care of me. On January 15, 2001 I came home. Mom and dad were very scared but I was really more stable now than I had ever been.
I am now an 18 pound 10 month old boy that is rolling, almost crawling, and pulling up. I am the best baby ever!! I have had my trach infections, colds, and asthma like wheezing, but I have definitely been much healthier since my trach surgery. Mom and dad will tell you without hesitation that traching me was the best advice that they have ever taken. They believe that I would not be here with my family otherwise.
On May 31, 2001, I had tubes placed in my ears. On September 12, 2001, I will undergo hopefully my last surgery. I am having my cleft palate repaired, a cyst removed from my underdeveloped right ear, my right tube replaced, and a hearing test. You see, I have failed the hearing test twice.
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Update November 2001 - On September 12, 2001 I under went a six hour operation to repair my cleft palate. I stayed in the hospital for 2 nights and received 24 hour nursing for 2 days at home. We did everything exactly as my doctor had said but we were given some very bad news when we went to our post-op visit. Dr. Sloan has been reapairing cleft palates for 17 years and has done 1,000's of these surgeries. He has never seen anything like what he saw. When he looked in my mouth he was in shock. My palate did not look as if it had been reparied!!! He had repaired tears and small pin holes, but never a complete palate twice. Mom and dad were blown away. They were speechless as well as the doctor. He reassured mom and dad that they had done everything right. This was just once in a lifetime happening. Mom and dad wondered why it was happening to them. I have been rescheduled for surgery again in March. I have to give my mouth six months to heal. Meanwhile, I am still trying to eat orally but with little success. Please keep in touch with mom and dad. They could use some support right now.
Update, April 2002 - Hi everyone! I had my second cleft palate surgery on March 13, 2002. The night after my surgery my nurse did not suction me for over 10 hours. My mom woke up around 12:30 a.m. and heard me crying. She told the nurse that I was not breathing right. The nurse said that I was fine. Mom again told the nurse that I was not breathing right and that she needed to suction me. When the nurse suctioned me she could not get the catheter into my trach. About that time mom noticed that I was no longer breathing. I had an immediate trach change and was bagged. It was very scary for my parents. The nurse pressed the code button and a lot of people in white coats came running. The doctors and nurses worked on me for 10-15 minutes with no success. Mom heard the nurse tell another nurse to call the Chaplain. Mom and dad were very scared. The doctor kept coming out into the hall and telling mom and dad what was going on. The doctor told my parents that my trach had been blocked for a while and I was suffocating. I finally could not get any more air through. After 15 minutes I began breathing again. A lot of prayers were answered!!! They told mom and dad that I was breathing on my own but that I was unresponsive. When mom came in and rubbed my head I opened my eyes and gripped her hand. This gave everyone hope. I was moved to ICU for a few days. I did great and was soon able to go home. I went back for my 2 week post-op visit and my palate was still intact! Mom and dad were so happy. Mom had been noticing me having what she called seizures. They were scared that I had been without oxygen to long. Three weeks after surgery I became very sick and had to put in the hospital. I had a staff infection, tracheitis, and a respiratory infection. While I was in the hospital mom asked for an EEG. Guess what? I was now having seizures. They reassured mom and dad that they were generalized not focal. This meant that the seizures were not caused by lack of oxygen. According to the doctor, I was born with these. Mom did not notice them until after my surgery. Now I am home and feeling much better. I am taking 2 medications for my seizures along with my medicines for reflux and asthma. I am 18 months old and the doctors are telling mom and dad that I will probably have my trach for another year. I am soon going to begin PT, OT, and Speech. Mom and dad believe that my purpose here is something wonderful! I hope that they are right!
Update, October 2002 - On October 9, 2002 I had to go to the hospital that I had been to many times. Mom and dad reassured me that this time would hopefully be eventful. We arrived at 6:45 a.m. I was very tired. I was taken in and put to sleep. My pulmonologist did a bronch and said that I desated into the 60's when they removed the trach. I had a lot of granulation tissue built up and my stoma was collapsing. Mom and dad were not very hopeful at this time. When the ENT came out she said that I had been DECANNULATED!!! Mom and dad were thrilled. Once the granulation tissue was burned off I could breath great. The ENT told mom and dad that I may have swelling which could cause the trach to be put back in for a few weeks until the swelling went down. We would have to play the waiting game. After 3 hours in ICU recovery the doctors moved me onto the floor. I was watched very closely for 24 hours. I did great! The next afternoon I went home. It is now a week later and I am still doing well. I hope that when I get sick things continue going well.
I have gotten my first cold. I feel awful. I cannot breath out of my nose and all it is doing is running. I do not like that stuff dripping from my nose. I take my hand and smear it all over my face. It feels much better this way. I have done great with my cold. Mom and dad are so excited!!! Things are looking up.
I am making great progress with my occupational therapy. I receive speech 3 times a week and I am not doing as well with this. Mom thought that when my trach came out that I would start talking. I guess that it will take time. I will update again in a few months.
Please write mom and dad if you have any questions or just want to talk. They have been through a lot but they are definitely stronger believers because of me. E- Mail address lpatrick.ingram@lee.k12.nc.us
