Mar 18, 2021 Latest post:
Sep 21, 2021
He’s a special kid. We say that about all our children, but he really is. He plays football, baseball, swims and dives. He’s active in his Scout Troop and on his way to earn Eagle Scout badge. He’s active in Youth Group with Cypress Church in Dublin and lives to serve on the weekends in kids ministry with the 3rd-4th graders. He plays the French Horn in symphonic band. He’s a 4.0 student and is learning how to speak German. He’s a friend to all and especially takes interest in kids with special needs. That’s just a snapshot.
On Thursday, March 11, we came to the ER because he had been throwing up all day. This is after about 2 weeks of head/neck pain and vomiting randomly. While in the ER, he had an MRI that showed a mass on his brain called a Craniopharyngioma. While typically not Cancer, it’s a rare tumor that 2 in a million people may get. AJ was admitted and on Tuesday, March 16 surgery was planned to remove the tumor.
Half the tumor was removed via the nasal cavity and the doctor had to stop due to obstruction and initial bleeding. They finished up, closed the nasal cavity with the intention of going in the next day to complete the surgery. They did a CT Scan to make sure no hidden bleeding and we would be good for the night of March 16. And then the storm began.
Doc came in to show us the CT scan results and it showed bleeding and he had to go right back in. He was laser focused on saving AJs life.
Not even two hours and we are notified Doc is done with second surgery and AJ was getting another CT scan. The news we got when we got to the conference room to meet the Doc was a full on category five storm. When Doc cut AJ open on top, there was too much swelling of the brain to try and acces the tumor. AJ was hemorrhaging so there was too much blood to work. So all he could do was create a skull flap and insert two drains to allow room for the brain to swell and drain. This is not what we expected. We had to allow Children’s ICU team due their job to try and stabilize AJ. We were on hour by hour and praying AJ could make it through the night.
Suz and I were by AJs side all night taking turns holding his hand and offering words of encouragement and prayers. Suz and the nurses were able to clean him up a bit. Vital signs, Multiple IVs, breathing machine, beeps, and constant traffic from the ICU staffing. Prayers are being answered as AJ made it through the night.
This morning we anxiously awaited the time to take AJ to get a CT scan. A couple of days ago AJ could hop up on the table and lay down where they needed him. This morning, a staff of six wheeled AJs bed, two drain towers, three towers with IV med pumps attached, and manual assisted breathing through the halls and elevators of Children’s to get the all important scan of his brain.
Not the news we wanted to start the day with. AJs right side of his brain is severely swollen and there is still no blood flow to the right side. The doctor ordered an angiogram and brought in a vascular expert at OSU to come to Children’s and lead the procedure. So this afternoon they went into AJs groin, through the arteries into his brain to see what was going on. The kid was thrown another curve ball.
The blood flow from the carotid artery just stopped 2 cm beyond the surgical site. This meant that the major blood flow to the right side of AJs brain has been compromised. The doctors do not know for sure what caused the stopped blood flow. There are a couple of small blood vessels still feeding blood to the right brain, but not a sufficient amount.
Plan going forward: Now we pray for God’s healing hand of favor to be laid upon AJs head.
AJ is in a medically induced coma to minimize brain activity and allow the brain to relax. They have increased AJs blood pressure to force as much blood as possible from the left side of the brain to the right side through the two small blood vessels. We wait about seven days for the swelling in the brain to go down. Then they begin to bring AJ out of the medically induced coma.
The Next 48 hours are critical for AJ. This term called peak swelling happens around 48 to 72 hours after trauma. There are no guarantees that AJ can handle the brain swell. He is a strong, sweet boy that doesn’t deserve this outcome. God has great things planned for AJ. Please join us in praying for God to perform a miracle and heal AJs brain. We all want to see his smiling face again.
Finally, the Love and outpouring of affection from this community is amazing. Thank you so much. AJ has touched so many of you with words of kindness and encouragement.