Dec 20, 2019 Latest post:
Dec 23, 2019
Welcome to our CaringBridge website. This journey started for Carter (7 at that time) and our family on July 29th, 2018. Carter had a massive seizure while camping. He had to be sedated, intubated and then flown in the flight for life off the mountain to St. Mary’s. At St. Mary’s they did a Ct scan which showed a mass in his brain and they flew him to Denver Children’s hospital where he was in the PICU. While we were there we learned that the mass was NOT cancer. He has a cerebral cavernous malformation (CCM). This is basically a cluster of extra blood vessels about the size of a walnut in his brain, what happens is that these can sometimes bleed and cause a hemorrhage and stroke and that is what happened. Thankfully Carter was able to come off the breathing machine and he recovered very well considering he had over a 40min seizure and stroke, he had no long term damage. The plan was to put him on seizure medication and watch him closely with regular MRI’s, he was given a neurologist and neurosurgeon team at Children’s that he followed up with regularly. Thankfully after leaving the hospital he did great with no problems. A little over one month ago (Nov 11th) Carter again had a massive seizure and stroke, he was again intubated and flown to Children’s and admitted to the PICU. Again he thankfully came out of this incident with no long term damage to his brain. So that leads us to where we are today. Our neurology team at this point feels strongly that we need to remove the mass in his brain as soon as possible stating if we don’t do it now he will have another stroke and we will be doing the surgery emergent at that point. So as incredibly frightening it is to make this decision for brain surgery we can’t risk him continuing to have the bleeds. He is scheduled for surgery at Children’s on December 20th @ 7:30am. We will keep everybody updated on this site because it’s too difficult to txt or call everyone and we want to focus on taking care of him.