I have two completely different Frankie updates to share, and I’m having a hard time holding both of them at the same time.
First, the really good one.
Frankie had pulmonology this week. We’ve been slowly weaning his ventilator settings, and they decided to try dropping his PEEP from 10 to 8. PEEP is basically the amount of pressure the ventilator keeps in his lungs after he breathes out to help keep them open. Lowering PEEP is a big deal for Frankie. He’s been on a PEEP of 10 for over a year. But we tried it and he tolerated it very well so he was cleared to try disconnecting from the vent completely for 5 minutes.
I don’t know that I will ever get used to seeing my child without vent tubing attached to him. He has had it for so long that to me, it looks like part of him. But there he was. Just breathing. He still had an HME attached to his trach. An HME is a small device that helps warm and humidify the air he breathes because his trach bypasses his nose and mouth. But there was no ventilator. No tubing. Nothing giving him breaths or pressure. He rocked it! He actually seemed to think the whole situation was funny. He’s so used to holding onto his vent tubing that he didn’t quite know what to do without it, so he kept sticking his finger into the end of his HME instead.
We have now lowered his PEEP to 8 at home. We’ll give him a week on the new settings, and then we get to start sprinting him off the vent at home. “Sprinting” just means taking him off the ventilator for short periods of time and slowly increasing how long he does it. We’ll start with five minutes twice a day for a week, then 10 minutes twice a day for a week, and keep increasing from there. I have waited so long to write something like that.
And then, in the very same week, I got hit with something I had honestly convinced myself we weren’t going to have to deal with. We also had his neurosurgery appointment. Frankie has ventriculomegaly, which means the ventricles in his brain are enlarged. For a long time we were watching him closely because of the possibility of hydrocephalus. There was concern about pressure building in his brain and the possibility that he might eventually need a shunt. The thought of a shunt terrified me.
Over time, though, things stayed stable. The fear of hydrocephalus slowly moved farther into the background. And his MRI this week was reassuring again. His ventricles are stable, maybe even a little smaller, and his neurosurgeon said his concern about increased pressure and hydrocephalus is now much diminished. Frankie also has bilateral craniosynostosis. Two of the sutures in his skull fused too early. But his prior appointments always focused on the ventricles, fluid, and his bulging fontantelle. So when we were told no shunt months ago, I thought we were clear of needing any type of craniofacial surgery. Turns out, neurosurgery was just waiting for him to reach greater stability to suggest meeting with the craniofacial surgeons about reconstruction.
As Frankie has grown, the changes to his skull from the craniosynostosis have become more pronounced. His head is becoming more brachycephalic, which means shorter from front to back, and the area across his forehead and above his eyes is becoming more flattened and pulled back. I’m walking around with that awful feeling where the tears are always right there. I can be completely fine and then think about someone operating on his skull and there they are again.
Maybe we’ll meet with the craniofacial team and they’ll explain everything and I’ll understand why surgery is the right thing for him. Maybe they won’t recommend it. I don’t know. I just know that the idea of skull surgery scares me in a way that I wasn’t expecting.
Which probably sounds strange coming from me. This kid has had major surgeries. I’ve handed him over to surgeons plenty of times.When we went to Nebraska for his intestinal surgery, I was a charging mama bear. I was ready. I knew exactly what was wrong. I knew what we were trying to accomplish. I had researched and questioned and pushed and advocated. I was scared, but the fear had somewhere to go. This doesn’t feel like that. There is no charging mama bear right now.
Right now I want to pretend we never had that conversation with neurosurgery. I want the reassuring MRI to be the end of the story. No hydrocephalus. No shunt. His brain is doing fine. Thank you very much, we’ll see you later. I want to go back to worrying about intestines and ventilator settings and all of the medical things that have somehow become familiar enough that they don’t scare me like they used to. I don’t want a new scary thing. I don’t want to think about another surgery or learn about skull reconstruction. I don’t want to think about someone making an incision in his head or moving pieces of his skull around.
I just want to celebrate that we’re making huge strides with his ventilator. I want to celebrate that we’ve started putting fluids through his G-tube and he’s tolerating them. I want to be excited that after all this time we’re finally talking about taking support away instead of adding more.I want to enjoy five minutes without a ventilator.
I don’t have an inspirational way to tie those two things together. I don’t have a lesson I’ve learned from it or a positive spin to put on it.
I’m incredibly excited about how well Frankie is doing. I’m scared about what might be coming.
And apparently this week I just have to be both. ❤️
