I'm so angry right now. I don't want to be, but I am. What I want to be is grateful for our many blessings. Instead I just want to punch something. Or someone. Preferably someone in a white lab coat.
I'm not sure how gathered this post is going to be, because I really need to let it all out so I can be fresh for our tarsorrhaphy consultation tomorrow. So be warned. This might just end up being a bunch of ranting.
I just don't feel peaceful or happy about the tarsorrhaphy. For one, it follows three general anesthesia procedures Ev has had which were not strictly necessary.
He was put under for a 'minor' heart procedure in November 2011 at 2.5 months old; his heart worked fine but he had a double aortic arch that was forming a ring around his esophagus and trachea; we were told it was better to go ahead and fix it to prevent any long-terms problems with his trachea. First he had a CT scan, necessary for the surgery, so we subjected him to a huge amount of radiation that increases his risk of childhood cancer. I hate that we had to do that, and I will always hate it with my whole heart.
The surgery was a miserable experience, and I still want to punch the nurses who wouldn't even let me sneak a peek at him during the night when he was in the CICU, and I was staying right next door in a family room. I don't know when I'll stop being furious about that, but trust me, it won't be tonight. Those visitation rules were arbitrary, made even more so by the fact that a few months after Ev's surgery, the CICU (as well as the NICU and the regular ICU) all became completely open, with parents allowed to literally live in the room with their sick kids. But because we were a few months early, I will always have to live with that memory of having to leave my son writhing on a huge hospital bed with a tube in his throat, crying without sound and surely wondering where mom was. That makes me want to fucking hit someone. The visitation rules were so arbitrary, and I begged so many nurses to let me come peek in on him. It was Ev's only night in the CICU, so it's not like we needed to get used to being apart. They could have made an exception, and beforehand, they had told me that they would - but the head nurse that night was a stickler. Fucks to you, (redacted) CICU staff. You will never get a card from me.
The next time we had to put Ev under was in February 2012, for a MRI, a procedure adults don't have to be put under for. That makes it all the more frustrating that my child, vulnerable to GA and still developing, did have to be put under! Fucks to you, people who can't make a speedier MRI machine and people who can't make anesthesia that won't rot my child's developing brain. I hope you sit on a tack or even a handful of them. After the heart hell, I was petrified for the GA for the MRI, and the effects on Ev were very minimal, presumably because no one actually hurt him. Our stupid hospital did adhere to the no parents in the recovery room rule, so by the time they let me back there, I could tell Ev had been sobbing on the table by himself for a while, something we don't do because we don't believe in cry-it-out and basically practice attachment parenting. So fucks to you, recovery room staff. Thanks for once again making me go against my basic child-rearing beliefs, and for an arbitrary reason at that. I hope you sit on a big, fat tack.
The MRI found that Ev had a tethered spinal cord, a very minor spinal issue, but one that could ultimately damage his bladder nerves if left uncorrected. (Allow me to point out that the surgery itself can cause the spinal cord to become re-tethered, and to check for this, Ev has to have a big tube shoved up his penis for 45 minutes every year for the next few years. Oh, the fun). The surgery went very smoothly and so did the recovery, but the idiot nurses kept Ev away from me for almost two hours after recovery because there was no one to wheel him upstairs to where I was waiting! By the time he got to me, they'd had to give him a narcotic pain med because he was inconsolable and because of that they had to give him oxygen. Narcotic pain med made him crazy and we almost had to give him morphine to keep him from freaking out more. Luckily, we learned narcotics = hell during the heart surgery, so we stuck to our tylenol and with a little prayer he eventually stopped crying. But still. Imagine if I could just push Ev upstairs myself as soon as he was ready to leave recovery! Novel, right? The nurse who brought him back to me told me to pat him on the butt, about two inches from his fresh incision, because that would make him feel better. I told her I didn't want to hurt his wound, and she said he must like it because he wasn't crying when she did it; he was doped up on Demerol and that was before it started making him crazy. Thanks for telling me my business, bitch who kept my child for two hours too long. Go sit on a really sharp tack.
After our son had been under GA three times before his first birthday, I came upon this gem: http://www.webmd.com/parenting/baby/news/20120820/anesthesia-may-harm-childrens-brains
It basically says GA will likely give Ev language and reasoning difficulties. Um, because as the son of two writers he's not going to need his language skills?! Right? Fuck 'em! Maybe he'll be good at math instead (NOT).
I'll have you know, NO ONE mentioned anything about brain development and GA to us, EVER, not one single time. And for not mentioning it, I hope they sit on something bigger and sharper than a tack. Seriously, even thinking about this makes me sick. It makes me want to punch God right in the nose. It isn't fair! It isn't right! What world am I living in? This one is shit! My kid already has to look funny and now he gets to have his intelligence stolen?
(Obviously I don't really think Ev will be unintelligent, and I think he's beautiful, too, but this is my blog where I get to rant and say what I want).
If Ev loses intelligence because of GA, I will want to kill someone. (NO I won't really kill anyone, of course). I just don't think that I can handle that!
He has so many physical handicaps, he really needs his brain! Anyone suggesting I put him under GA is threatening his future. I'm sorry, but that's how I see it. I don't care how great a doctor they are. If they've never heard of this research and don't help me avoid GA, they can go sit on a motherfucking tack.
I actually just looked the research up because I wanted to refresh myself on it, hoping maybe it would be 'better' than I remembered. Instead it's worse.
Ev is supposed to have surgery next summer to fix his ear and surgery when he's five to install his BAHA, and more and more surgery! I HATE IT!!!!!!!!!!!!!
Didn't hear me?
I EFFING HATE IT.
Unless you've been in my shoes, you don't know how much!
I don't want this stupid tarrhowever the hell you spell it! I just don't!
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