I spent the majority of the day at the hospital today since I didn't have to work. Which I think was good for everyone. I really enjoy being able to spend time with my family of course, but also being able to get all the information first-hand.
For the most part things are about the same. They tried again to extubate him this morning with no luck. He'll go for a few seconds on his own and just stop. They made the decision to just make him comfortable for the weekend and try again on Monday. So for the time being he's being lightly sedated. He can wake up from the sedation as it's the lightest possible dosage, but he'll just be really really drowsy. It's sad to see, but it's easier on him for the time being.
They did come in to do an x-ray on his arm. Apparently after looking at a chest x-ray one of the doctors noticed something on his upper arm since it was also partially in the photo. They now seem to think he has some infection in his bone, which can be caused by an infection in the blood. (and as you know the E.coli got into his bloodstream.) We won't get results from that until tomorrow. Fortunately the treatment for an infection of this type is the same treatment he's already getting, so even when they confirm what it is, he'll already be getting treated for it.
I think that come monday they will make a decision regarding keeping him on a ventilator or not. I reckon it depends on how things look, if he's able to breathe on his own, etc. I....don't really have words for that. So, I'll leave that thought on it's own.
When I came in today around 1 they were talking to a lady from palliative care. She was super nice, although I can't quite remember her name. She just came in to talk about things, life in general, plans for the future and what not. I think it was really good for my brother and SIL. Jason is coming to terms with things as best as he can. I really think it's great that they have people who are available pretty much all the time to just come and sit down with you and talk. About anything you want, any concern you have, any worry. It makes me feel better for them, and I guess for me. We talked a little about faith and questioning "god's plan" and all that.
While she was there a couple of people came in from Little Flock, which is a church out in Bullitt county. I think my SIL used to go there, or her mom goes there or something. They came in to pray and stuff of course and to offer support. As an atheist that sort of stuff always makes me feel awkward and out of place, like they can just tell I'm not of their ilk. But they were very nice and I'm always appreciative of good things people do for our family.
Speaking of which, I'd like to thank the Louisville Association of Realtors for the dinner they provided for patient families last night. They had spaghetti, bread, salad, brownies and drinks. Definitely better than hospital food. It was SO nice of them to offer that. We went back to the room with our food, but a lot of people were talking about their respective family members and just getting a chance to relax a bit. I'm always blown away by the things people do just for the sake of being kind.
A chaplain came in with one of the doctors earlier this morning before I came in. I guess they sat everyone down and just put the facts out there. My brother "had a melt down" as the charge nurse so bluntly put it. (jesus, wouldn't you??) Like I said, I believe he's getting a grip on the situation. Anywho, he told me that he just spilled his guts to the chaplain. For no real reason, other than I guess needing an outside person to talk to. Told her about all of their troubles, financial and otherwise. He made mention that right now he can't even afford a haircut. A little while later the chaplain came back and gave them a gift card to walmart so he could get a hair cut. You would have thought they gave him a million dollars he was so happy about it. I'm in tears just thinking about it. I guess I'm just so jaded, but sometimes I feel like the world is a cold and awful place. And in many many ways it is, but these past few weeks have shown me just how amazing and wonderful people CAN be.
To add to that, one of Amanda's mom's coworkers came in just to show some support. She brought a basket FULL of all sorts of stuff. Candy and snacks, books and lotions for Amanda. Yet another example of kindness that comes from no other place than just wanting to do something nice for another human being.
We also got a visit from the art therapist lady. I know that she has a title as I met her a week or so ago, but for the life of me I can't remember. Their job is to help siblings of patients to deal with the reality of these situations. Be it just coping with an illness, or coping with end of life. The therapists get to talk to the children about the situation in terms that they can understand and are then given art supplies to express their feelings. They all get a little book they can write their Ayden story in, or draw pictures, whatever they want. They are also going to make signs for him that can be hung in the room. My SIL's 3 older children haven't been to the hospital in two weeks, when he was doing better. So I know it's going to be hard. But I think this will be helpful. Arts and crafts is definitely my department, so I plan on being on hand for that. Maybe it'll help me too?
Mom took Alex and Evan for the weekend since they LOVE going to her house (even though they complain that they have to "go to a different country" to go to mom's house in Indiana, heh.) Hopefully she will have them back in time to do that. They're 3 and 4 years old, so they only have a loose understanding of what's going on. They know Ayden is sick, but that's pretty much it. I mean, a 3 year old doesn't understand hydrocephalus and MRIs and ventilators. But they know that their brother has boo-boos that need to be fixed. sigh
One happy thing from today was a surprise visit from my cousin Nikki. She had told me before that she didn't think she'd be able to come visit. Five years ago she lost her son at Kosair when he too was an infant. He had many of the same issues that Ayden had. Of course we completely understood her reasoning for not wanting to come. I can't possibly imagine having that happen and then coming back to the very place you lost your child. But she came. And she did SO good. Only a few tears. She stayed for a while and we talked and laughed and looked at pictures and caught up. I know it was good for everyone involved. For Amanda for that little bit of support from someone who's been there, and even for Nikki...to show her that she's stronger than she thinks. And for me because, well, she's my cousin and I missed her.
So what about me? Where do I stand with all of this? I'm just floating around really. I pull it together and try to maintain composure. I'm just there to take whatever, you know? I went out and bought us all Qdoba because I know my brother hasn't had Qdoba in like a year. He was so damn happy that he finished off my burrito after he ate his even though he was about to vomit. When I can do something nice for him and make him smile, it makes me happy. There is SO much pain everywhere right now, so I try to provide any little bit of happy that I can. Even if it's just because of a burrito.
But it certainly doesn't mean that I'm completely ok. I mean, how can you be? I love my brother's children like they were my own. So when they're in pain, I'm in pain. It's not at all easy to see Ayden the way he is. It's not easy to watch my father break down every time he comes in the room. It's not easy knowing that while I'm currently in the comfort of my own home, in my pjs, away from the hospital Amanda is laying on a tiny chair bed wondering what tomorrow will bring. And it's not easy knowing that there isn't a damn thing I can do about any of this. We all just have to take it. Good or bad, it is what it is.
So, I blog. It's helped tremendously. But I think that I need a little more than that. Please don't fall out of your chair when I say that I've thought very seriously about visiting the chapel in the hospital when I visit. Why? I don't know. It's a strange feeling because I don't believe in God. Or, I find it very hard to believe. But right now I feel very desperate. I feel like I need to just go plead my case. Maybe if I go in and talk to whoever it is that's running to the show, maybe things will get better. Although saying all of this makes me feel...ashamed? Guilty? Like as an atheist, or agnostic or whatever you want to call me..that I shouldn't do that.
I don't know. I don't expect to wake up tomorrow all the sudden believing. I know that I'm not going to start going to church or any of that. Maybe I just feel like I need to say my piece and hope that if God exists it'll be taken into consideration. I don't know what to feel about it really. I just feel very sad and at this point, very hopeless. And perhaps a little in denial? Every time I see Ayden and look into his little eyes I just can't grasp that there's a chance he won't be around anymore. It hurts a lot.
Anyway, that's all I got for now. I don't know if I'll be visiting tomorrow since I absolutely HAVE to pack some more. But I'm sure I'll talk to someone tomorrow and get those xray results and stuff. And of course I'll be back up on sunday.
As always, thanks for the good thoughts and kind words. I'll keep thanking everyone every day!
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