Thursday, February 4, 2010

Jailen's Story

Well, I guess I should start at the very beginning. I had a perfectly normal, uneventful pregnancy. Three days before Jailen was born I fell off of the bottom step & landed on all fours. I didn't hit my stomach, I caught myself. The very next day my blood pressure began to rise, & I was feeling a bit crampy. I was sent to the hospital for nonstress tests & ultrasounds, then quickly released because everything looked normal. Same thing on the next 2 days. On the 3rd day around 5pm I went into natural labor, contractions 5 minutes apart, so I went back to the hospital. The nurse said I was only dilated 2cm so we would wait a while before calling the doctor. My blood pressure was rising & Jailen's heart rate was dropping. At one point I remember looking over at my mom & telling her that something wasn't right because Jailen's heart rate was down to 33. The nurse came in around the same time to say the same thing & that she had already called the doctor & he was on his way. Finally, at 3am they did an emergency c-section. Jailen wasn't crying & he was completely blue. Come to find out there was a true knot in the umbilical cord cutting off his oxygen. Noone knew this ahead of time. Anyway, he had to be resucitated & was suffering from seizures & brain hemorrhage. Over the next few days we discovered that he was retaining cerebrospinal fluid on the brain & needed a VP shunt. At 1 week & 1/2 old he was transported via ambulance to a different hospital. We stayed there for almost 2 months. To make a very very long story short, he's been diagnosed with Cerebral Palsy, Seizures, Hydrocephalus w/VP shunt, Slit Ventricle Syndrome, Scoliosis, & he's farsighted with some slight optic nerve atrophy on the left eye. He's had one shunt revision. He also has had bilateral cranial decompressions in May 2007 as a result of the Slit Ventricle Syndrome. The shunt had apparently over drained, causing his ventricles to collapse & become slit-like. This was the worst! He was suffering from what appeared to be shunt-malfunction-like symptoms 5 out of 7 days. It was miserable for him & for me & the family. I opted for the surgery. The removed the top of his skull, shaved it down about a 1/4" & then put it back. This gave room for the normal amounts of cerebrospinal fluid without causing him to be so sick. Just recently, we got the opportunity to try HBOT (Hyperbaric Oxygen Therapy). He has done 80 sessions with drastic improvements. He is in a wheelchair, wasn't speaking very well (I was pretty much the only one who could understand him), & he was on a pureed diet only. After the HBOT, he is now eating regular whole food, he can speak in 6 word understandable sentences, he's spelling his name by himself, & just last week started to pedal a tricycle all by himself. He is a miracle. This has been a very difficult experience for both of us, but he has definitely shown me how to be strong & patient through it all. I wouldn't change him for the world. I do wish I wouldn't cry so much, though. :) lol

No comments:

Post a Comment