How Fox Almost Died

And by almost died, I mean he DID die. For a solid few minutes.

Don’t mind my language, as I am beyond angry, and this isn’t an easy subject.

Let me start off with, I love his doctors, nurses and surgeons. They are the reason Fox is still here with us today. What we are furious about is that the anesthesiologist greatly fucked up.

Fox was supposed to have surgery. We walked him down to OR and sat in the waiting room. His surgery was going to be to place a temporary reservoir, along with perform an ETV.

Fox is 3 weeks old. Within that time frame, Fox’s head has grown from 27 centimeters, all the way to 31, as of today. A baby’s head should only be going up .5 centimeters PER WEEK. He is double that at this point, causing some concern.

  • ETV: An ETV is basically a small hole that is poked into his membrane where it will create a flow of the fluid built up in his brain. We are all naturally born with this, as it will drain the fluid into our body and we reabsorb it. Fox, as we know, was born without this, and so the fluid just keeps building up in his head, causing it to become enlarged.
  • Reservoir: A reservoir is like a little bubble that is placed on top of a baby’s head where they will every few days go in and tap it, or take a needle, and pull fluid out by hand. It’s similar to a chest port, but on the head instead.

Now, we were waiting for about an hour (and this surgery was going to take 2-3 hours) when I saw his surgeon approaching us. My heart dropped. When I say time stood still, it truly did. I thought the absolute worst had happened while Fox was under. And I wasn’t entirely wrong, but we hadn’t even gotten to that point yet. The surgeon explained that once the tube was down his throat, he began convulsing, and the oxygen wasn’t getting into him. He felt that it wasn’t justified to try and attempt the surgery again, because at this point, Fox’s vitals needed to get better and he needed a break. Which I 100% agree with.

They hadn’t even begun the procedure yet. One of Fox’s doctors received a pager which informed him that something was wrong, so he rushed in there to see a group of people huddled around Fox, as he wasn’t breathing. Four rounds of CPR were performed to resuscitate him, as he had been dead. Three people checked to see if the tube was misplaced and cleared it that it was not. He then checked to see if Fox had a collapsed lung, but Fox was okay. Finally, his doctor exclaimed that he wanted to check the tube once more. When he did, he noticed that the tube was in fact, not in the right area and not going down his airway, but put into his esophagus. So really, Fox would have been fine if the anesthesiologist had put the tube in properly.

I’d be a little more understanding if something happened during surgery, but this was a simple tube down his throat that so many people getting surgery get. And Fox isn’t the first baby to get a procedure done, so why was this happening? I’m so beyond thankful that he is now okay. But I need more answers. I am angry, furious actually. And really, for a while it didn’t hit me until I was sitting in the room with him and just thinking and then it finally registered. I bursted into tears and became very upset. And we have every right to be. My son could have died, because of someone’s negligence. I have so many emotions going through me right now, as this should not have happened. Now we are basically back to square one, and have to wait for surgery once more. Fox needed this pressure in his head gone, so he could have some relief. And now we have to wait. And we were also told that if we ask for his doctor to do it instead, they can, it just has to be at the patients request. And no way in hell am I letting an anesthesiologist going near that boy and the tubes again.

I plan to find a patient advocate. I want to have better knowledge and reassurance of everything, because this is not something to take lightly. We shouldn’t feel like we aren’t safe. We shouldn’t worry about the people who have our children’s lives in their hands, are going to fuck up. Especially with something so minor and simple like a tube going down his throat. I understand he is small, but as I’ve stated, other preemies have had surgeries as well. This is far from what I expected to go wrong, and I want answers. I am not the type to get angry. I’m actually a very understanding person, because I hate hurting other people’s feelings, and I get mistakes can happen. If this were to happen to me, then I probably would have been like “oh, it’s okay, accidents happen.” and moved on with my life. But this happened to my SON. And the thought of losing him caused my entire body to break down mentally, and physically.

Fox is stable now. It will take him the rest of the day to recover and just sleep it off. But three weeks old, and he’s already been through so much. My heart hurts. I just want him home and healthy and happy. And I know this is just the beginning, and I’ve accepted that and will embrace that this is what life will be like. But fuck, it’s hard. It’s hard watching him through a little plastic box, and only being allowed to hold him when I ask. It’s hard going home some nights, to a quiet house where my baby is not, and in the hands of strangers. I just want him to feel normal. I want him to experience normalcy. But he wont, for a very long time. This is our normal now. But dear god, if another tube goes down his throat wrong, I don’t know how I’ll feel. I will not let him have this happen again. He is my world. And he is a fighter.