Hospital Madness

I don't even know how to describe my emotional state right now. Let's just say it's a negative one. And I feel like if I don't get rid of some of the build-up, I'll either explode, or sink to the bottom of the ocean under it's weight.

I can't believe how hard this hospital stay has been. I thought it would be much easier, especially at the start when I was so relieved that Joel was doing so well. But I hate, hate, hate the hospital. I mean, I love it, I love the good nurses and kind doctors and that my boy gets medical help. But I hate it, I loathe it, and I can't stand it. You know?

I've got one nerve left, and everyone has been standing on it. At times I have been almost cranky with the nurses, and I'm not usually like that. I haven't been liking some of the nurses and doctors, and I'm really not usually like that either. I've just been ready to give someone an earful, and lucky as you are, seems you're going to be that person. In fact, it's been so bad that I have resorted to the extremely junvenile tactic of waiting tell the nurse is gone and then saying really sarcastic and rude things, even making faces. Thank goodness I have at least waited until I was alone.

It is a good hospital. Generally they are very kind and careful with my son. I do feel that for the most part he gets good care there.

Part of it is losing two good weeks sitting in limbo. Part of it is the pain of leaving Joel at 4:30 when Steve comes to pick me up. Leaving him and knowing he'll just lie there bored and alone until bedtime. It hurts.

Then there are all the horrible associations of the hospital. I don't know why. I don't know why. It just feels like death is slowly creeping down the halls while I sit there. Not the suddenly startling recognition kind of death. The kind that leaves dust and cobwebs on your heart. The kind you see coming a long way off, but you are too tired and leaden to move. The kind that turns everything grey and dingy as he slithers past hissing that he'll be bbbackkkkkk. I just want to hold Joel and sob, but I don't want to do that in front of the docs and nurses.

So every little thing is like a joy buzzer to my frayed nerves and raw heart. When the Joel gets poked for blood instead of drawn from his pic line. AND THERE IS A CARD THAT SAYS BLOOD DRAWS ARE OK. Yes. A card. I saw it. But maybe that nurse was a bit, um... not wanting the hassle to work it out for me. And the doc on call isn't crazy about using it, in case that ruins the line. And all I want is for people to bend over backwards to make things as easy and nice as possible.

Like disconnecting his pic line and disconnecting the monitor when it's not in use. Glass dust rubbed into my eyeballs, people!! Even though it's a pic line, and even though I ask to be disconnected between meds, some nurses are keeping the fluids running. Meantime, we are peeing like a racehorse (me in sympathy ;) ). It's hard enough to lift him and hold him without all the wires and tubes. Today, I almost disconnected him myself... Wait, I actually did disconnect him from the monitor and when the nurse came in cause it was beeping, I said "We don't need the monitor and we want to be disconnect. We are going to be free."

Then there is the neurologist (yeah, my regular neurologist is away on vacation, of all the nerve) who keeps threatening, I mean, offering to hook Joel up for an EEG. Because Joel is still having some seizure activity. And no matter how many times I tell someone, still, still, still, it is being mistaken for other things when I am not there. (They ARE hard to recognize) And when I am there and point them out, it is to no purpose, as the only result is that the neurologist comes back to thre-- I mean offer an EEG.

And no, he doesn't want to see the one from the sleep study two weeks ago. No, it doesn't matter that they hooked up extra electrodes, it won't be as good of a picture as the EEG he would do. He just wants to get a better picture, make sure they are seizures, and see which parts are seizures, or if the choking is a by-product. AAAAAAAGGGGGGGGGH. aaaaaaagggh. agh. sigh. COME BACK SOON, DR. BOOTH.

Because even if I have to get violent, I'm surely not letting them hook him up like that again, the very thing that got us started here in the first place. WHEN THERE ALREADY. IS. AN. EEG.

Then the probiotics I left can't seem to get into Joel twice a day, like I asked. I got so snarky with a nurse, I said "Hmmmm. Well, I PAID for them and brought them in, so could you please bring them to me RIGHT NOW and I'll give them to him myself." And I never say stuff that way. (well, not to anyone who is not married to me, or a product of my womb, anyway.)

And this morning there was a second pressure sore from someone strapping the CPAP machine too tightly to his head, just overlapping where the last red mark hadn't yet faded. And I wanted to say (but thankfully DIDN'T) "Could they NOT SEE the LAST mark?? Did that NOT give them a CLUE that they shouldn't tighten it too much??!!)

Of course, all of these things just make me feel worse for not being there. If I were there, then I could troubleshoot a lot of this stuff... I feel like it's partly my fault that Joel's not as comfy as he could be, and, well, in some ways for sure it is. Because I know he'd be more comfy with me there to love him and keep him company. And it is so hard to leave him there every day. So, so, so hard. But all you can see of that is the grouchiness, the "I'll bite your head off if you don't start trying a bit harder to make this as pleasant as possible" attitude.

But really, my heart is broken to leave him there. Really, I just hear a clock ticking away the seconds of his life. Really, I'm terrified of all the other days I'll spend in that building just watching my baby suffer, and being there is a reminder of all of those horrible things coming up.

So. There's only two more sleeps left. Tonight and tomorrow. Then, as long as nothing else goes wrong, I finally get to bring my boy home. It feels like a lifetime has passed. I can't wait. I just want you home, sweet little boy. I miss you.