Kacie

I'm not sure where to start. Yesterday we started the day wondering if we were going home to ending the day back in PICU. As the day went on Kacie got worse and worse. She had severe headaches, was throwing up and then started having seizures. We weren't sure they were seizures at first because she was totally alert during them. So the Doctor ordered a CT scan and an EEG. The EEG confirmed the seizures and the CT scan showed a clot in her sinus vein with bleeding surrounding the area. The doctor was on the phone with 8 different doctors (one from Toronto Canada at a Clot center) and they all had different opinions on how to treat her. There were three ways to go about it and each had very high risks associated and they wanted Scott and I to help make the decision. They all agreed that Kacie needed a MRI first to see how much blood flow was around the clot before we could make a decision.

The MRI showed that Kacie didn't have a clot but that she did have some bleeding and swelling in the brain caused by her high blood pressure. This condition has only been diagnosed in the last ten years and it is called Posterior Reversible Encephalopathy Syndrome or PRES. We found out how dangerous her 1st diagnosis really was when we saw the relief on the doctor's face. So we learned that when a Doctor says your daughter has a 50/50 chance it usually means it is a lot worse than that. The other good news was that all the problems she was having are completely reversible once her blood pressure stabilizes.

Today she has still had some symptoms like the throwing up, but that has improved some and she hasn't had any headaches or seizures. However, today she has added some vision problems which is common with this type of illness.

This has been a big setback but at least we still have our little girl.