During the last half of 2021, Holden underwent three expected medical procedures. He had new ear tubes placed, surgery to align his right eye and his annual MRI. After we received the results of his MRI, a fourth and unexpected procedure became necessary - a ventriculostomy to monitor the pressure inside his skull (intracranial pressure or ICP).
The ventriculostomy would involve Holden’s neurosurgeon drilling two holes in his skull to pass a catheter through one of the ventricles in his brain. This catheter would then be hooked up to an external transducer that would monitor his ICP for 24 hours in the PICU.
Holden needed this unanticipated procedure because his MRI results indicated that he has dilated optic nerve sheaths. This can be an indicator of increased ICP. Long term consequences of untreated elevated ICP are vision loss, headaches and neurological damage. If Holden showed signs of sustained elevation during the ICP monitoring, it would mean he would need another Cranial Vault Remodeling surgery
Once again, Holden, Sam and I made the journey to Medical City Children’s in Dallas for Holden to undergo the ventriculostomy/ICP monitoring.
The morning of the procedure in the pre-op room, Holden was calm. After all he has been through, Holden is pretty used to the pre-op routine. As usual, he drank the “goofy juice,” so when it was time to say our good-byes, Holden was as buzzed as a bar fly and blabbing away as they wheeled him off.
The ventriculostomy would take about an hour, so Sam and I grabbed some coffee and prepared ourselves for the hell that was about to occur.
Typically after surgery, Holden is a complete wreck coming out of anesthesia. For about an hour, he screams violently. He also develops superhuman strength which he uses to smack people in the face, rip out his IV and try to throw himself off the bed.
So, when the call came through that Holden’s surgery was finished, Sam and I were caffeinated and entered his room ready to take on the task at hand.
And then Holden woke up….
The intensity of Holden’s anger this go-around is difficult to put into words - and it did not stop for FOUR hours. He couldn’t rip out his IV this time because, in anticipation of him doing so, it was taped to his foot and wrapped so many times it looked like cast. Holden screamed so vehemently that the nurses gave in and took the IV out after about 30 minutes.
He punched me in the face and almost threw himself off the bed. He ripped the electrodes off his chest and the blood pressure cuff off of his arm. Eventually, his hands migrated to the catheter placed in his brain. At that point, the nurse started talking about arm restraints.
At one point, I thought, “I’ve never seen The Exorcist, but this must be what it looks like when the demon possesses that little girl.” At that same moment, Sam looked at me and said, “Is he possessed?”
For Sam and me, a little humor helps us get through these difficult situations. I hope as Holden gets older, he will find coping mechanisms to help him through the hard times. Until then, I worry that Holden’s trauma will have lasting emotional effects on him. It certainly leaves its mark on me.
Eventually Holden calmed down, and was grouchy for the rest of the day - occasionally attempting to grab at his catheter. We made it through the day with the help of a Paw Patrol coloring book, toys and an iPad.
The following morning, we received the results of the 24 hour ICP monitoring. Holden needs another Cranial Vault Remodeling. Two things are occurring simultaneously that make this necessary:
Holden’s daytime ICP was in the normal range (10 mmHG), but at night Holden had elevated ICP (20-25 mmHG) for durations of 30-45 minutes. When he is apneic, his carbon dioxide levels rise, which causes his brain to get a tiny bit larger.
His brain is growing at a faster rate than his skull.
This was not the news Sam and I wanted to hear.
Later that day, we arrived back in Austin feeling sad and defeated. This will be Holden’s third Cranial Vault Remodel in under five years, which just feels like way too much for a child to go through.
As I started unpacking, I found the Paw Patrol coloring book that we had used to distract Holden the previous day and set it on the kid’s art table. About an hour later, Holden came up to me holding the coloring book with a huge smile on his face.
“Mama. Where did you get this?” he asked. “It’s so cool!”
Confused, I replied, “Don’t you remember you colored in it at the hospital yesterday?”
Holden just gave me a look like I was crazy and ran off to color the pictures of his favorite pups.
And then I felt a moment of joy despite the upsetting news we had received that morning. Holden didn’t remember the trauma of the previous day. Sam and I may have it etched in our brains for eternity, but Holden doesn’t have to relive it and that’s all that matters.
