Monday, March 31, 2014

Traumatic Brain Injury

My daughter was born healthy and normal. She suffered a traumatic brain injury at 2 1/2 years old, we still do not know exactly what happened that day.

She is now unable to speak, walk or even sit up on her own. She has partial paralysis on the entire right side of her body.

She is diagnosed with Hemiparesis, a type of cerebral palsy, and epilepsy.

The only treatment we are allowed through insurance is physical,occupational and speech therapy. She wears braces on her feet to help keep the muscles in her ankles tightening and were working to get her a brace for her right hand. She also takes medication for seizures and medication to help keep her muscles relaxed.


Personal Story:
unnamedThe date was September 13, 2012. Kylie was 2 1/2 years old and was being babysat while I was at work. I often went to pick up my sister from work before picking up Kylie as Kylie was being watched at her home. On the way I got the worst phone call any parent could ever want. Kylie had reportedly fallen off the deck and was unresponsive. The ambulance was on it's way. Approaching the turn to my sister's house I could see the ambulance coming up the road. That was my baby in there... I followed as fast as I could, arriving only minutes behind the ambulance. When I entered the ER I demanded to see Kylie, I wasn't going to answer any of their questions or fill out any paperwork. They took my into the room she was at and told me to sit in a chair in the corner. I couldn't see Kylie. There were too many doctors and nurses surrounding her. Kylie was admitted with a glasgow coma scale of, I believe, 3 which is about the lowest you can get and still be alive. She would not open her eyes, she made no sounds and barely responded to painful stimuli. I only got to sit there a couple minutes before they ushered me into a private waiting room. It seemed like I was there for hours. Kylie was in the ER for an hour and a half. The police came asking me stupid questions like where I worked. The only thing I was concerned about was what was wrong with my baby. It felt like I was in a dream. They told me she would have to be taken to a different hospital 2 hours away and that she would be taken via LifeFlight (helicopter) I was finally able to get a hold of Kylie's dad and he rushed to the hospital as soon as he could. They let me see Kylie before she was taken on the helicopter. She was intubated and unconscious. Kylie's dad arrived just in time to see the helicopter lift off. We made the 2 hour drive down to Children's Hospital of Illinois. About 10 minutes before we arrived I got a phone call telling me she was being taken into emergency surgery. Thank god they didn't wait for us to arrive. We waited again for what seemed like hours before someone came and told us about the surgery and Kylie's condition. Kylie had suffered massive head trauma and her brain was swelling so much that it was trying to move down into the back of her neck. Kylie had suffered a subdural hematoma along with bleeding in her brain. They had to remove a portion of Kylie's skull to allow the brain more room to swell and they had to remove blood clots that had formed in her brain. They told us this was something Kylie would never recover from. That the little girl we knew was gone. Kylie was taken to the pediatric critical care unit after surgery where we waited again for something like 5 hours before she was stable enough for us to see her. Waking into the room was heartbreaking. Her little head was so swollen and she was still intubated, unable to breathe on her own. She had multiple IVs in both her arms and legs. She didn't look anything like my little girl. They had a wire surgically placed in Kylie's brain to monitor the pressure and swelling inside. It took almost a week before Kylie opened her eyes, but she was absent. There wasn't anything left of the little girl I once knew. It was hard to tell how aware she was of anything. She had moments where her heart rate would skyrocket to almost 200bpm. She was given medicine to help her relax. They put a PICC line in her arm, which is basically a multi port IV that runs in her arm and stops at a point near her heart. Kylie's doctors on multiple occasions spoke to us about "being prepared for her to not recover" and what our options were. I would usually walk out on them when they began trying to talk about that. They also spoke of her probably needing a tracheostomy. A tracheostomy is a surgical procedure to create an opening through the neck into the trachea (windpipe) to provide an airway. They never thought she would be able to breathe on her own again. About a week into our stay, one of Kylie's nurses thought she witnessed Kylie have a seizure. Although Kylie didn't move her pupils were moving in a repetitive motion leading the nurse to think it was something like an absent seizure. They wanted to put the bone they had removed back in Kylie's head at this point but needed to do an EEG to check for seizure activity before they could. Everything went well with the procedure and the bone went back in. About a week and a half after being admitted to CHOI Kylie was still intubated but was initiating breaths on her own and the doctors attempted to take the breathing tube out. I waited in the back of the room, hardly seeing a thing as the doctors surrounded her expecting to have to put the breathing tube back in. I think I stopped breathing for 5 minutes while they pulled the tube out. They had to use the oxygen bag to help her start breathing and put her on a a very high concentration of nasal oxygen, but she did it. She was breathing on her own. As Kylie became more stable she was gradually moved to different wards of the hospital. From Peds ICU to intermediate care and finally general pediatrics. Although Kylie was more stable she was still completely absent. Sleeping most of the time, she never moved or made a single sound. It was discovered when Kylie was moved to intermediate peds that she had developed a bed sore on the back of her head about the size of a quarter. After Kylie was weened off the nasal oxygen she was given a tube placed in her nose and down to her stomach to start feeding her. Kylie didn't do so well with that. She threw up many times and often dislodged the tube and forcing them to replace it. Kylie also began to accumulate large amounts of fluid between her skull and skin where they had removed and replaced the bone. They surgeon spoke to us about possibly having a shunt placed to remove the fluid if it continued to build. He came in daily and attached a large syringe to a needle and drew the fluid from her head. After about a week of this, the fluid was gone and Kylie did not need a shunt placed. Kylie was observed to have multiple seizures while in intermediate care. There was one day she must have had 10 or more. Luckily only lasting a min or so. Kylie was placed on an anti-convulsive medication and we didn't see any more seizures. Kylie was then determined to be stable enough to move to general pediatrics and she got her first bath since her head injury and I finally got to hold her. The hospital had done hearing and vision tests on Kylie, to the best of their ability. It was determined that the parts of Kylie's brain responsible for sending this information were functioning as they should be but there was no way of knowing how Kylie's brain was interpreting the information. In preparing to go home, it was decided that Kylie would have a G-tube placed in her stomach for feeding her liquid nutrition. I was very concerned about a surgery in which Kylie would need to be intubated again, but she did great and was breathing on her own immediately after the surgery. Kylie was in the hospital for 47 days following her brain injury. She came home the day before Halloween.

Contributed by MOM Stephanie Bradford

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