Friday was and has been by far the worst day I have ever had to deal with and I hope that I will never have to deal with something like that again. Yet I know that this is just wishful thinking. I know that this is our life now and I know that days like that will happen again. I can just wish they never happened again as much as I want to, until I get blue in the face. I can wish and wish and wish and wish. I can wish for things to be different. I can hope that things are different. I am really just fooling myself with wishful thoughts. Hopeful, wishful, ignorant, naïve thoughts. Our life is now about seizures. About Dinky's differences.
Medications. Physical therapy, occupational therapy. Seizures. Genetic condition. Global delays. That's Dinky. Our tiny, little, happy and amazing little guy. For every giant step backwards we have small ones forwards.
What made Friday so awful? What made it literally the most hellish day in my existence?
Dinky was fussing for a while around 5am. I tried everything possible to get him back to sleep. He didn't want a bottle. He didn't want to nurse. He didn't want to be swaddled. He didn't want to cuddle. He didn't want anything but to just fuss and be really uncomfortable. And then the twitching started. First they were small, like normal. Twitches led to small clusters. Which led to larger twitches that lasted longer. Which in turn led to one twitch lasting 4-5 seconds. And that longer twitch bled into a full blown generalized tonic-clonic. Husby was sleeping, Dinky between us and after 3 minutes I told him to wake up, that I was going to get the Midaz. I couldn't get the stupid glass vial to open. Husby snapped it open for me and I pulled all of the Midaz into the syringe. I gave Dinky his dose and waited for the full 5 minutes to see if it stopped. It didn't. I called 911 like I was supposed to. He didn't stop.
They showed up and we loaded up into the back of the ambulance. He didn't stop. We left town and he still didn't stop. He had been seizing now for about 15 minutes. The paramedic called the hospital to alert that we were on the way. He didn't stop. Get out of town and she called again to ask if we could give another dose. We could. I dosed him again. He still didn't stop. He started desating. Gave him oxygen and suctioning. And yet he didn't stop.
It is agonizing in the most heart wrenching, gut pulling way. Watching your child seize like that and not being able to do anything. We got to the hospital and ran him in. Didn't even bother pissing around with the stretcher. They just scooped him up and ran him in. Our Ped was hot on our heels. Husby called him when we left to tell him what was going on. Yet Dinky was still seizing. A temp check, more Midaz (this time rectally) and our Ped slapped in an IV into his scalp and jammed him full of more Midaz. Once that drug entered his system intravenously, he finally stopped. After an hour. He. Finally. Stopped.
Our Ped called down to Children's to see what they wanted him to do. He called 4 people and finally called someone higher up in the chain to see what the hell is going on and why no one wants to call him back. So we were told to increase his Topamax. Our Ped asked if they wanted us to send Dinky back down and they said no. The only thing that they would do would be to wake him up and send him home. So Dinky had a deadline of 12pm to wake up on his own. They tried to get blood to run lab work on him and they stuck him in so many places. Heels, ankles, feet, hands, wrists, elbows and they even tried his neck. Twice. Finally out of his fingers they were able to get the basic tests done but that was it.
12pm came around and Dinky woke up on his own and was fine for a few minutes and once again started twitching. More Midaz. Our Ped came back in after the 5th dose and said that maybe it was just the Midaz working out of his system, which was why he was twitching. He went back to continue on with his day. Dinky woke up out of the Midaz daze and sure enough his legs started jerking and twitching non-stop again. 6th dose of Midaz. Turns out the twitching was the start of another seizure and the Midaz stopped it and yet as soon as it wore off, it came back. So our Ped came back in and he called back down to Children's to fill them in on what was going on. They wanted us to come back down.
Transport was supposed to pick us up after 6pm. 8:30pm. Changed to 11pm. Which got changed to in the morning if he wasn't doing any better. We got moved out of the trauma room that we had been in all day and it seemed like things were going fairly well.
The next morning the twitching started again so the nurses gave him another dose of Midaz and his medication early. As well as Lactulose. Apparently it was news to our Ped that Dinky was constipated. Yet he's always suffered from constipation. So first of three doses of Lactulose for him. The first dose he tolerated fairly well. Until he decided to vomit up bright greeny-yellow goop which turned out to be bile. Gross.
Second dose he once again gagged and tried to vomit. Seemed silly to me that they wanted to give him three doses of the stuff even though the first one was working. Very, very well. Evening came rolling around and with that his medication. Got that into him and his final dose of Lactulose. Which he promptly threw up. I pressed the call button, needing new bedding and to alert them that Dinky had thrown up. All that happened was they turned the call off. Nice.
So almost an hour (I think) later someone came in and I told them what happened. She went and phoned our Ped after she remade our bed. And guess what? Dinky needed all of his medication again. Because the nurses didn't see how much he had actual expelled. ...well excuse me but if someone presses the damn call button, generally freaking means to get into the room and see what the need was. Seems simple enough to me.
The next morning we got the all clear to come home. Thank goodness. No trip to Children's for us. Get home and Husby went to get Tink. Who came home, settled into his lap and proceeded to throw up. Great. Just what I want to deal with. Puke everywhere. She nailed Husby like a champ. Poor guy. She also got me really well. Thank goodness for Gravol.
...which brings us to last night. Tink fell asleep just before 5. Woke her up just after 6 and she was back in bed at 7:30. Thought she would be up at some awful hour but she woke up just after 6. Sleep does the body good. Dinky however was throwing up quite often last night. I had to give him 3 doses of his medications because just after he had them, he threw them right back up.
Have I mentioned how much I hate puke?
I hate it. It's so gross.
It is really, really hard being strong all the time. The last few days I've been so ... off emotionally, which is understandable. No one needs to be strong all the time. In fact it can be really exhausting. I know that I'm allowed to have bad days. I'm allowed to be sad for Dinky. I'm allowed to be sad for what the future holds. I'm ALLOWED to feel upset. And you know what?
It's okay.
It's okay to feel the giant amounts of feelings that comes with situations that are way, way over your head and so far out of control you might as well be an astronaut trying to land on the moon. backwards. In a tin can full of marbles. And the moon is made of slippery Jell-O. And your tin can has no windows. Or controls for that matter. You just have a balloon and a paperclip to try to land that sucker you're stuck in.
Needless to say it has been all kinds of crazy for the last little while. I'm allowed to have bad days. The important thing is that I don't let it consume me so that all I am is sad. That is not our life. Our life has sad moments. Our life is not sad. Our life has sad moments. Those moments we cannot control, however, there are always new tomorrows.
And tomorrows give you a new day. How I handle life is up to me. I refuse to let some deep dark pit chew on me. So while I have bad days, I have many more good ones.
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