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Carter’s Story

Site created on December 15, 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.

Newest Update

Journal entry by Jami Lloyd — Dec 23, 2019

Well this is the best possible update, we will be getting out of the hospital today!! Carter is doing much better, still a lot of swelling but the swelling around his eyes is much better. The swelling on his forehead could take weeks to go away. He can’t bend over or move quickly but as his brain heals that will get better. He will have to take it really easy for a while. He has been walking around more and more. Overall we are thankful for how he is recovering and that our family will be able to be together for Christmas. Thank you all for the kind words and all the support.

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