ICP? Other kinds of pressure!

We are no strangers to ICP. To start, Simon obviously had it before his first surgery at 6 months of age. How else would you explain everything going on? He had a voracious appetite but fell off the charts for weight. He had to be held constantly. He would not sleep on his back. He was diagnosed with hypotonia (low muscle tone) and significant developmental delays. I felt like I watched my baby wither away before my eyes in the days leading up to the surgery. After the surgery and recovery, he started physical and occupational therapy; and we ramped up his diet. Baby boy just took off from there!
Then, he obviously had it before his second surgery at 4-1/2 years of age. His skull bones opened up and became like swiss cheese. His speech and hearing were affected. His sleep was horrible with sleep walking, thrashing, and moaning all night every night. His behavioral quirks really had us thinking that he was on the autism spectrum. Then, after the surgery, everything improved. He does wear hearing aids for sensorineural loss, and he still receives speech therapy twice a week. His sleep is not perfect. Still, everything got immensely better.
So, we have been through it. He never had the vomiting or the optic nerve pressure or the inconsolable crying or other symptoms they had us monitor, but he definitely suffered. You would have never known it, though. He is such a happy kid!
Knowing all this, maybe there is some clarity as to why I felt like I got punched in the gut when the craniofacial surgeon mentioned getting an MRI to check for ICP and requested axial slices of the brain from the CT scan in order to check the size of the ventricles. We have been through it enough times, and this time around the only thing observed is the growing soft spots. He seems to be doing great otherwise. Or is he? Am I missing something? Could my baby be suffering in some way that I do not see yet? My mind is whirling with not-so-good possibilities, and I don't really want to entertain any of them. For now, I just want to get through the surgery. But, are they doing the right thing? Do we just need to cover holes, or is it possible that a reconstruction is needed again? There are too many unanswered questions!
In the meantime, I feel so sad. I look at him, and I try to soak in everything. Even though he has gone through all of this like a champ for 7-1/2 years, I still want to take it all in just in case. The reality, even if we do not reveal it in conversation, is that our baby has to go through something so serious, that papers are signed agreeing not to blame the surgeons in the case of death. I will never get used to that. I will downplay this next procedure as a relatively minor one compared to the last, but note the word relatively. I will talk about it in cool, clinical tones so that I can avoid choking up. The last thing that I have the time or energy to do right now is break down. Then again, I may reach a point where I am by myself and can risk doing so. I won't do it in front of anyone, though. Nothing they can say or do will bring comfort, and I do not want to add to their stress. Still, people need to know that most of what is going on day-to-day around me seems laughably trivial. Facing your child's mortality gives you that sort of skewed perspective.