A quick update

Well, we knew this was going to be hard, but I'm not sure we thought it would be THIS hard. Turns out little dude takes after his mama when it comes to sedation. He fights it, he hates it, he wants to get up and run away. Just like I managed to wander around my hospital room and cry about being underwater when I was under the influence of Stadol, Ike is bucking and thrashing his way out of restraints and doing double donkey kicks at the nurses – all while he's chock full of fentanyl, versed, dexablablahreallylongname, ativan, methadone, morphine, ketamine, and or the paralytic "roc". "Is he 'rocked'?" the nurses asked when they were getting ready to re-tape his ET tube. "Uh," was the answer as he started to cry and turn his head. And this was after the shot of morphine.

The kid has the metabolism of, well, a very metabolic thing. Or he has a superpower against sedation. Either way, it has been a hard night and day. He's out of it enough to be groggy, but with it enough to fight and kick and sign "milk" over and over until your heart breaks.

We're worried that he's having a tough time with pain and that's what's overriding the sedation. So far, the Ketamine has worked the best, but it's not a long term solution. Of course, needing two people to hold an intubated kiddo still 24 hours a day is not a long term solution, either. The doctors and nurses and Steven and I are all trying to figure out what the hell to do. We think getting him to poop will help (well, not with pain, but with being comfortable). And then after that we just have to figure out how to keep him from getting so pissed. He's pissed to be restrained, he's pissed to have a tube in his nose, he's pissed to have the NJ on the other side of his nose, he's pissed that he hurts. He's pissed at the continuous flow of formula. He's pretty much just plain pissed.

He had a drain removed from his chest this morning (is that TMI? I guess all of this is), and remarkably, that was no sweat. His NJ failed and we had to put a new one in, that wasn't fun. And then his IV failed and we had to get a new one of those. The "quiet" Friday has turned into anything but.

Steven will be here with Ike tonight while I go back to the hotel to try to get more than 3 non-consecutive hours of sleep. Sleeping and eating are just wastes of time during all of this, I wish we could suspend them and be like hibernating bears, but awake and fully functioning. Alas. It's always hard to take care of yourself when all you want to do is take care of your baby. But I will try to sleep and eat and not crash the car into any poles in the parking garage. And so will Steven.

I am not sure how much time I'll have to update as the days progress. Things are just goinggoinggoing around here. So if there aren't any posts for a while, don't freak out. Maybe I will post a million times a day. I don't know. I always feel weird when it comes to posting medically things like this, even though I do it all the time. Like maybe I'm putting too many private things out publicly. I don't know if it's good to blog about this stuff. It makes me uncomfortable – but the support and love and wishes and prayers are INCREDIBLY comforting. So then I think it's OK. Blogging is sort of like a phone tree for the 21st century, I guess.

As you can see I'm all over the place right now and that is a good sign that I need to stop what I'm doing and take a deep breath.

Deep breath.

No ketamine for mommies.

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16 thoughts on “A quick update

  1. We don’t know each other, but I’ve been reading your blog for over a year and have laughed and cried with you,
    I have a 3 year old son and have had some medical challenges, panic attacks, and sleepless nights.
    I found you through my friend Jodi…
    Anyway, thank you for posting updates. We are all out here praying for Ike, you, Steven, the wee one, and the wee-er one.

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  2. Oh Kari, it sounds pretty rough. I hope so much that they can find a way to relieve his pain so he can heal faster. These are the times that can make a parent feel crazy. I’m so glad Steven is there with you and Ike. I strongly feel they need to give the parents some sort of medication. You are not sharing too much medical information. BTW, I was on Stadol once and they didn’t warn me — I thought I was pregnant with a stuffed doll — it’s powerful stuff. I am sending you my love and prayers, thinking of you all day, and in my mind I am surrounding you and your family with love.

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  3. Kari, write all that you can and want to. We are here to support you through this whole time and the more you shed it off your back, the more you can take on the next few hours. Don’t protect US from your feelings or medical jargon! You have every right to feel what you’re feeling. We’re here for you guys. Lay it on us.

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  4. Ditto to all things posted above. I hope little mr. starts to feel better and not as wonky. I hope you get some rest. there are thousands of people thinking of you all and praying for you. post when you feel up to it. we’ll all send good juju to you for the next few long days.
    hugs from the northland.

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  5. Kari – Hugs enclosed for all of you. I check for updates from you and Steven all the time so please keep posting if you can and feel up to it. You have a strong support system on here and there’s a strong prayer link too. Hang in there!

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  6. I’m sorry it’s been so hard. I have found medications work differently in kids and the elderly. Maybe one of those meds – one which is supposed to be calming him – is working the exact opposite making him more aggitated (Ativan – ???). Also Morphine is a great pain reliever post-op but I’ve also seen it give patient a horrible migraine. Tylenol works wonders with Morphine. Just a thought. Pooping would help him immensely too. I’m just brainstorming here. Wish I could be there helping you.

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  7. I agree with the comment about the support system, even if it’s over the internets for now. You are liked and loved and cared about, so write *anything* you need to…we are here.

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  8. So many times I have wished that we “out here” could each take some of your stress and fear so you could rest and recharge. It seems like a lot to have on one Mama. Know that we are all sending lots of prayers, hopes, wishes and love. Hang in there! Love to Ike and all of you.

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  9. I’m so sorry you are having a hard time, and I hope it gets better.
    You may have already tried this, or maybe it would not work, but is Ike old enough to watch dvds? When Beadboy1 was a toddler and in the hospital, we often kept him calm by plopping my laptop in front of him with dvds of sesame street. We did not need to keep him as still as you need to keep Ike, but I thought I’d suggest it anyway.
    Good luck!

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