My son was 3 weeks old when we went to the pediatrician for a check up. She measured his head circumference and thought he may have hydrocephalus so she sent us to get a brain ultrasound to rule it out.
They originally thought they had found a cyst, so they ordered an MRI to see more detail. It didn’t end up being hydrocephalus or a cyst, but did find the AVM. We went to the neurosurgeon and talked over what it was and did follow up MRIs to watch the AVM. They said it was very risky to operate or embolize it since he was only a month old. A couple weeks later, we did an angiogram so they could get more detail.
Originally they wanted to embolize it when he was 6 months old because the risk of a stroke from the procedure was higher than the AVM rupturing. A couple weeks before it ruptured, we got another MRI done and found that it had gotten larger. About 1/2 cm. he decided to move up the date two and a half months.
It ended up rupturing on 9/26/2013. A week before they were going to treat it. Supposedly it was only a 2% chance of it rupturing the first year of life. At 4am, my son screamed and cried with his eyes closed. It was almost like he was having a bad dream. I held him in my arms trying to rock him to calm him down. He cried for about 10 or so seconds and went limp. I put him in front of me on the bed and was trying to stimulate him and yelling his name. He was gasping for air with his eyes closed. My husband was calling 911 and I put him on the floor to do CPR. I started giving rescue breaths and was feeling his pulse. He started seizing. He stopped gasping for air and his color was turning purple. I immediately started CPR for a couple minutes until paramedics arrived. They were doing CPR for another 15-20 min. They got a pulse and transferred him to a local hospital. He ended up going into cardiac arrest again for at least 10-15 min before getting a pulse again. I told them that he had an AVM and it most likely ruptured. Once he was stable enough, they took him to get a CT scan. He again went into cardiac arrest during the scan. They were doing CPR and a nurse came to us and told his to let them know when to stop. We told them to keep going. They told us to go kiss him and be by his side as they were still doing CPR. He prayed and prayed crying and kissing him. His vitals started coming back. Finally he was stable enough to be transferred to LA where his doctors were.
Once we got to the hospital he was unstable again. After about an hour he was stable enough to go into surgery. They gave us a poor prognosis. They said he wouldn’t have any brain function but we still
had hope. He made it through surgery and his vitals remained stable once they controlled the bleed. They also did the new hypothermal cooling blanket to keep his body cold to preserve his brain. He had
that for about 4 days. He got an MRI and they said the bleed was controlled but then he started having seizures. They said the blood on the brain was toxic so it was irritating the brain. He went into
surgery again and they drained the remaining blood. They had a drain in his brain for a week. He finally was opening his eyes but they would just stare up. He wouldn’t move his eyes or extremities. He had a breathing tube and was on a ventilator and an NG tube to feed him.
About two weeks ago they told us he would need a tracheostomy and a g tube. He went into surgery for those and is now healed. Everyday he had physical therapy and now can hold his head on his own for up to a minute. He is now off the ventilator breathing on his own. He can move his eyes and track you, smile and he can move his extremities. He still has the trach and g tube because he does not have a gag reflex or cough. He just started swallowing randomly but it needs to be consistent. Everyday he is showing improvement and they said we can be discharged in a couple days. We have been in the ICU for over a month. Once we go home, we will have therapists working with him at home.
He is our little miracle.