I was hoping I'd never have to write an update like this, but here I am.
Talked to my SIL yesterday and was informed that Ayden's EEG was looking worse than it had when he had originally been admitted. So they did an MRI last night to get a better look at things. I get a text this morning saying "bad news. call me when you can". Not a good thing to hear first thing in the morning.
His brain damage is extensive. Only 10% of his brain is functioning, which is the part that controls organ function. He has hydrocephalus, which is what you often hear people refer to as "water on the brain." It's when one has a large amount of spinal fluid building up in the ventricals of the brain. This, obviously, is not a good thing.
To be honest, I'm not entirely sure what causes it. I got a lot of information today and it all hasn't quite settled in yet. But you can read up on it on wikipedia if you're interested.
At any rate, they believe he still has an infection of E.coli. There are some areas that look like abcesses and they think perhaps the infection settled in one of those abcesses and wasn't able to get killed off by the antibiotics. If I recall correctly, I don't think they are entirely sure why this happened. There is also evidence of previous strokes, perhaps before he ever went to the hospital.
I'm sorry if this is all really disjointed, I'm just trying to get down as much information as I can....but it might not necessarily be cohesive. I'm sure you guys can bear with me.
So, the problems Ayden has been having with apnea and low respiration is apparently caused by the brain issues, not by the reflux. And with all the brain damage, the doctors say he'll probably never be able to actually eat on his own. So, the surgery he just had was probably completely unnecessary. Which is heartbreaking to hear. As I mentioned (I think?) he had to be intubated for that and so far they've had no luck getting him off the ventilator. There are times when he breathes on his own, but then he just stops and the machines have to take over for him. Tomorrow they are going to try again to see if he can do it. They think the sedation is making things harder, so they're going to give him a bunch of caffiene to esentially wake things up. Once it gets a chance to circulate they'll try again. If he can breathe on his own, great! If not, they'll obviously have to put him back on. I don't believe they'll be making any more attempts to get him to breathe on his own after that.
They don't think the surgery necessarily made things worse though, the infection and everything would have still been there.
What happens next? Well, they are thinking they want to put in a shunt to relieve some of the pressure...but they can't do that with that little pocket of infection. The infection could spread and that would be very bad. The infectious disease doctor has put him on a wide spectrum antibiotic to kill off whatever this is, but that takes 4-6 weeks. And to be quite frank, I don't believe he will last that long. I hate to say that, to put it down in written form, but I can't not face the facts. And even if they could get rid of the infection and relieve the pressure in his skull, it's still not going to change the damage that has already been done. Ayden's organs are functioning, but he'll never eat on his own. He'll always need a feeding tube. He'll never be able to walk or learn anything. He'll spend the rest of his life on machines laying in a bed, in pain and just existing...not living. It's a horrible thing to imagine. And it's a horrible thing to witness.
As it stands he is in a lot of pain. When he's awake his eyes are open but he "cries" in agony every few minutes..even though they keep him pumped full of pain meds. And when I say cry, he winces and looks like he's crying, but can't really because of the tubes. But you can see it in his poor little face. All that pain.
And they're saying that him opening his eyes and sucking on paci are involuntary, things that even "brain dead" babies can do. But I don't know, it seems like more than just an involuntary thing when he follows his daddy's voice with his eyes. When I talk to him he looks in my direction, but no matter where my brother or SIL are standing he strains in that direction. Maybe I'm just trying to be hopeful or something. To try to find a little glimmer of hope. As horrible as all of this is, as I've said, we take what we can get. If we can get his beautiful eyes to open and follow his daddy's voice, then, we'll take it.
Right now I have mixed emotions. On one hand, I'm certainly not giving up. Miracles happen, right? What if the doctors are wrong again? They told us before he'd have 2-3 days, but we had a whole week with him doing really really good. They were telling us he'd go home. What if this is just a bump in the road and somehow something was wrong and he makes a recovery? I can't let go of that little bit of hope. But, I also can't ignore all of the facts sitting in front of me. How can I pretend that a slew of doctors don't know what they're talking about? The physical therapists have stopped coming, they've stopped coming in with cheery faces. Everyone that comes in and reads the charts or sees Ayden ends up leaving in tears. If that isn't discouraging, I don't know what is.
Everyone is at a different place dealing with this. Amanda is, right now, holding together very well, I think more for my brother's benefit. She's super informed, looking up information on the internet...and trying to just come to terms with things. My brother, he's not at that place yet. And my dad, well, he's a mess. I'm teetering somewhere in between. I know that I need to be extra strong for my family, but I can't always keep it together. I broke down and sobbed over Ayden's bed today. Feeling his soft hair in my hands, seeing his tiny body engulfed in tubes and wires. It hit me like a ton of bricks that I'm probably never not going to see him like this. Not alive anyway. I hate saying that. I hate feeling it. I hate being angry at the god I don't even believe in.
All I know is that I don't want him to be in pain anymore. I don't want him to suffer. I want him to actually live, not just exist. Does that make sense? I'm trying my best to be positive, but wow, it's really really hard.
So right now I'll say that I'm so appreciative that we've gotten all of this extra time with him. I mean, we never know what's going to happen tomorrow. I'm just happy for today. I'm happy I got a few more shots of Ayden with mommy and daddy and grandpa. I'm happy he opened his gorgeous eyes for me. I'm happy that tomorrow happened to be available to have off, so I'm able to go spend the whole day with my family. I'm happy that I have this extra little person in my life to love, even if it was only for a little while.
ps- I am continuing to take pictures at the hospital. I'm sorry if any of you are uncomfortable with them. But we need as many as we can get.
Tiffany,
ReplyDeleteI am so sorry. It sounds so much like our little Isaiah. The last MRI's and CT scans showed only minimal brain function. The virus he had destroyed everything else. The told us that only his little organs were working.
We experienced all of the feelings you described. We didn't want to lose him, but we didn't want him suffer. It was agonizing. In the end we brought him home. My daughter made the decision to remove his feeding tube.
He would have been six this July 19th.
Today I went downstairs. My daughters were here with their kids. It was so awesome to see them all together. And then reality hit hard. Isaiah wasn't there. My daughters had their babies within months of each other. Isaiah and CoCo, Josiah and Aiden, Anna-Grace and Madeleine. To see one missing was really hard today.
I know whatever your family makes will be the right one even though every decision seems unimaginable. One thing that I tried to think on for myself was that I watched Isaiah touch more lives in his short 12 weeks than most people do in a lifetime.
Even though we walked the same path I wish I had words to help, but I don't know what to say really. But if you ever want, my email in on my profile. I'll be here for you.
no Teri, your words are helpful. It's nice to hear some perspective from someone else who went through the same thing. Obviously none of the choices that are being made are my choices, but I know that my sister in law and I share pretty much the same opinion on things. I suppose right now we're just taking things day by day. Thanks, as always, for your kind words. I will be going to the hospital today with my laptop and I will be sure to let my brother and SIL see.
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