My daughters name is Kaylee. She was born prematurly with Hydrocephalus, Colpocephaly, Chromosome 6 Deletion, and several other issues. Very early in my pregnancy we were told Kaylees head was swollen. Every ultrasound we were told it was getting bigger and bigger. No one knew why her head was so swollen. I went into labor at 35 weeks. They discussed whether or not her head would fit through the birthing canal. They decided at the last minute that she would fit and I had a vaginal birth. She weighed 4 pounds and 9 ounces. Had she went full term I would have had to have a C-section.
She was immeditately taken to the NICU after I had her. The docs checked her out and told us she had Hydrocephalus and needed taken to the OR immeditately to put in a shunt. Within hours after having the shunt placed the swelling in her head had significantly went down. We left the NICU after 5 weeks and were home for 16 days before rushing Kaylee to the ER. She was having seizures and her temp was 94. They decided that she had a bacterial infection and kept her for 5 days and then sent her home with a PICC line to finish her antibiotics.
We took her to the ER the day after she was discharged because her temp was 94 and she was having more seizures. They sent us home and told us to let the antibiotics run there course. Two days later we took her to the NOW care in our area, again for low temp and seizures. They admitted to the local hospital where they decided the bacterial infection had infected her shunt. They partially externalized her shunt, (left the valve in place and brought the tubing out of her chest). After less than 24 hours they decided that she wasn't putting out any CSF so she must have been absorbing it on her own and took her shunt out. Due to other issues with level of care at the hospital we had her transported to Cincinnati Children's Hospital.
After a 2 and a half week stay we were discharged and went back home. We were home for 6 days before we rushed her back to Cincinnati children's hospital because her head was swollen, she was vomiting, and irritable. They ran some tests and realized she needed a shunt. They decided to do an EVD to make sure she was over the bacterial infection. After 5 days she went to the OR to have her shunt placed but came back with her EVD still in placed and no shunt. They noticed the sacral dimple above her butt and wanted to get a MRI to be sure there wasn't an open connection between it and the spinal cord. MRI showed there was not a connection and she was ready to go back to the OR.
Her surgeon was out of town so while waiting for the surgeon to get back she developed another bacterial infection and had to do a 3 week course of antibiotics. During that three weeks she got moved to the PICU and went into respiratory failure and was placed on the Ventilator. She faced several viruses and bugs and respiratory problems. She had to have a second EVD placed. She had these two EVDS replaced several times. A few weeks later they added two more EVDS and removed one so she had three at this point.
After a couple days they pulled out the third one so she was back to two EVDS She was supposed to go down to the OR to have her Shunts placed and EVDS removed and the day before surgery she had a positive CSF culture for MRSA. They did a second culture to be sure and it was negative. They want 5 days with no growth on the cultures before taking her to the OR.
She is now having more respiratory problems and we aren't sure when we will be able to get her shunts put in. She has been here in Cincinnati Children's Hospital for over 3 months.
If you would like to see her full story you can follow her on Facebook at facebook.com/prayersforkaylee2013