September 01, 2016
So Many Uncertainties
This week I feel like I've been walking through a nightmare that I can't wake up from. I'm having such a hard time processing how a UTI could turn into something like this.
The good news in all this is he's showing how incredibly strong he is. We were worried about this turning into meningitis for a few days. But even if it had, the three different antibiotics they have been giving him are also for that. And since he was already in the hospital, we caught it before we think it could have done any major damage.
He's also had zero respiratory issues during this, which shows his strength as well. His oxygen needs and vent numbers have never looked better or been lower.
They have been poking him for blood every 6 hours to check on the infection. The bacteria in his blood is showing less and less, proving we are on top of the infection and the antibiotics are working.
The bad news is that his EEG showed he's having seizures. Everyone keeps telling us they don't think it's permanent, it's most likely from being so sick and his high fever, and they have started him on seizure medicine.
Everyone also keeps telling us it's because he's so sick, but my bubbly little Aiden is gone. He's like a vegetable right now. He hasn't woken up in days. The only time his eyes are open, they are rolling into the back of his head as he's seizing and incoherent. Aiden has disappeared mentally, and I'm nothing short of devastated.
Yes everyone says they think it's because he's sick, but what if it's not? They can't give a for sure "it's because he's sick", it's always a statement of, "we THINK it's because he's sick". That word "think" terrifies me. What if this caused him permanent brain damage? What if he never wakes up? What if my sweet, expressive little boy that lit up as I walked in to see him each day is gone? What if he never catches himself halfway through a smile, only to force himself to pout as his eyes twinkle from knowing he's being silly again? Will he ever smack his lips at me after I kiss him? Will he ever wiggle in delight again as I munch on his squishy cheeks? Will he no longer wake up and squirm with excitement when his sisters come to play?
And if he really is ok, when is he going to wake up and be himself again?
I'm crushed. We were so close to the end of his NICU stay. For the first time, I could see a real end in sight. He was happy and acting like a normal baby. He didn't need any extra medicine for almost two months. We were weaning his sedation with no problems because he wasn't needing it. All we were doing was waiting for him to grow big enough to start trials on the home vent. And then suddenly, our entire world came crashing down on us again. Suddenly my baby is mentally gone, and so sick I can't hold him again.
I find myself feeling so incredibly angry as well. Why did Heavenly Father allow this to happen? He is perfectly capable of just letting Aiden have a simple UTI. Is it really necessary to continue letting him suffer? What was the point of letting him get so sick he was on the edge of death again?
It's nothing short of torture to have to helplessly watch your child suffer. And in spite of all the miracles we've had, all I can feel is a deep anger towards God right now, while also desperately pleading with Him to give me back my happy baby.
I'm so scared for the future. I'm so scared for his recovery. I'm so scared that he is never going to wake up. I'm exhausted and angry and anxious and heartbroken. And it's so hard trying to act like all is well around his sisters to shield them from undo stress. Makes this situation that much harder to pretend to be happy when you are screaming and crying on the inside.