Tuesday, September 1, 2009

Recovery Road


We got home last night, and realized within minutes that we still have much to do for Bennett and his recovery. He was in some pain, crying, trying to get him bathed and maybe a bit overstimulated. Vomited, had to clean that up, get some prescriptions filled, lots of chaos.

This morning, after everyone zonked for the night, he was very difficult to manage. He wants to get up and walk, but is very wobbly, so we don't want him to fall and have to be right there by his side. It's a two-person job right now, it really is. Plus, Carter needs what he needs as well.

He was really in some distress this morning, and we both were thinking it was constipation. Eventually we had tried everything to console so we made the decision to go in. Glad we did too, since he was REALLY impacted. Not that it was great getting covered in piss and shit, but wow, did he relax a little after that ordeal. Poor little guy, just hadn't pooped since probably Wednesday of last week. And the meds make it that much more difficult.

Anyway, trying to take it slow for him, try to not rush around him, as he seems to disorient pretty easily. Trying to make sure Carter keeps it down and simple around him, no sudden running or jumping and all that.

He's a bit pale, a lot tearful. Not sure why. I'm a little concerned about that. Well, a lot concerned, I just have to keep reminding myself that he had surgery less than a week ago. Baby steps. Baby steps.

No seizures so far that we have seen. And we look for them ALL THE TIME. But so far none that we've been able to detect. I wonder...what should I call his official anniversary? Sophie's 3-month just came up. But do I count the seizure that the EEG picked up Sunday night as a seizure and so that's the last one, the anniversary, assuming he has no more? Or do I count the last clustered set?

See, dumb shit like this matters to me. I like to remember anniversaries. Which reminds me. Forgot to mention this in all the hub-bub of last week. Bennett had brain surgery on August 27th, 2009. On August 27th, 1999, exactly ten years earlier I met Jennifer in person for the first time and we went on our first date. We'd talked on the phone before that and in e-mail (we met online) but the first day we met? August 27th.

Weird huh?

Anyway, hoping that I am doing all I can for him...not sure what else I can be doing. If we had an ability to communicate this would be easier, so I could get some idea of what is bothering him when it is, but we'll figure it out as we go.

16 comments:

  1. The lack of communication definately sucks. And even though Trevy and I have a really special connection...and I can read his body language most times...there are still those places that NEED verbal communication. I definately feel ya on that one. And I hate that you're having the guess. That's just so hard on everybody. But Bennett can feel and understand love. And he's getting that from you guys by the gob load.

    Sometimes days seem to drag by until suddenly you're three months later. And who knows...maybe three months from now Bennett will be able to tell you where it hurts! How kewl would that be?!

    Happy Anniversary!

    ...danielle

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  2. This is Joyce. Wow, I can't believe you're home already!!:)!! I had a meeting downtown today and thought I would stop by as I was driving past the Clinic. So I checked the blog and holy cow you were already on your way. Although we have not experienced brain surgery, I have sat with families in M35 for weeks. So I think that is a good sign.

    I know the first few days home can be a bit frightful and I'm sure the other families that have been down your similiar road can tell you more about that, but I can recall the panic that sets in everytime you hear a funny noise come from the babe, or sense that he is in pain. Hang in there, time will help, and it sounds as though you are both doing an amazing job. Sending good vibes for a speedy recovery from surgery.

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  3. I definitely understand what you and Danielle feel like when it comes to lack of communication. Twenty years of being Taylor's mom have given me some insight, but there are still days when i wish she could tell me what she needed.

    That is a really sweet picture of Bennett sleeping. The first few days home is always a huge step. I'm sure you will figure things out as you go.

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  4. Well, happy 10th anniversary of meeting!

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  5. You and Jen ARE doing everything you can and you are doing GREAT!

    It'll only get better from here. He looks fabulous!

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  6. Pedialax suppositories became our best friend after the surgery. It's important to keep him moving. If he seems in pain, err on the side of medication. Take the seizure that happened on the EEG as the anniversary. It's nice to have a date to reference the last seizure from but don't set your hopes and dreams by it. He is still recovering and seizures can happen from the scar so breathe and try to stay away from the statistical analysis. Carter is having a rough time too. It's hard for a five year old to get all of this. Hoping Bennett feels better soon. I remember how much Emma wanted to take off and run but I would not let her. We also had surgery on Thursday, home on Monday and I refused to let her walk without holding hands till Friday. She was definitely capable sooner but I needed time to let go. We gave Tylenol whether she needed it or not until the swelling was gone. Kept a happy house.... Take care.

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  7. Wow, sounds like you guys have your work cut out for you. I bet it's only going to get easier from here on out...not that it helps you much today. I hope Bennett starts to feel more himself soon. I can't imagine where he's at right now...just having had brain surgery and then back home again before he could really even figure out what was going on. It would be tough on anyone, let alone a baby who can't even tell anyone what he is thinking. Give him some time...he'll come around. He's too much of a fighter not to ; )

    Karen

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  8. I am so happy to hear that things are going OK...When you really think about it, it is AMAZING that a few short days ago, you were getting ready for the big day...

    I, too, would be nervous in having this responsibility of caring for him so quickly...But remember...The surgeons, etc. got to know you and Jen...They trusted you both enough to grant that early release...They have faith in you both!!

    It is VERY difficult when you can't communicate...Believe me, I know, even though Colby can let me know some things in his body language...As Bennett comes off of the pain meds, I am sure he will be more alert and stable and will begin to make his needs better known....Until then, just trust yourselves....See how wonderfully y'all have done so far?

    And I ADORE the photo....

    Cyndi

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  9. That is GREAT news that he is wanting to walk around. The more he does it, the faster everything will start working the way it's suppose to.

    Sophie was pale for at least a week after surgery. Pale with dark circles around her eyes. She was also quick to let the tears flow but it was usually because we were trying to make her do something besides just lay in bed. Though I could usually tell the difference between crying in pain and crying in protest. We gave her Tylenol whenever she seemed like she was in pain which was almost every 4 hours.

    You ARE doing everything you can for him. He is in the comfort of his own home and in the comfort of his family.

    For right now...take it one day at a time. Thinking too far in advance is overwhelming. Do what needs to get done today. Each day recovery will be just a little bit easier. Each day you will see a little something here and a little something there that tells you he is coming around.

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  10. hot diggity damn! Sorry but no hyps is worth a cuss word or two!

    I'm sure the recovery will be slow, but getting rid of that business is just incredible!

    And yeah, freakin pain meds make you constipated.

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  11. Well the wish is: After surgery he'll begin gto have better communication skills, so give the boy some time.

    I know most of us sound like broken clocks, and keep saying: "Give it some time", but really that's what Bennett needs right now.

    He first had seizures, now a short time after he hasn't have any, giving him time, paid off. Now let's just hope giving him a little more time keeps paying off.

    Constipation is a normal (though undesirable) side effect of a general anesthesia, so you better keep an eye on that for the next couple of days.

    Being at the hospital is handy, but it doesn't compare to being in your own home, and you're there now. Seems like you have a nice place to take him to, if medical problems come up, so you're all covered for pretty much every eventuality.

    I have to say that like Joyce, I too am very surprised about the little time you spent in the hospital in post op, I guess that means something, and I choose to believe it means something good (EEG aside).

    I don't believe you could be any better parents than you are being right now, so really don't fret about trying to do more for Bennett, because I think you're already doing anything humanly possible for him.

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  12. I know it feels scary and uncertain right now trying to stay on top of everything at home, but like most above me have said, it will get better each day. Even if it seems slow.

    I am the most impatient person on the planet. So I should not preach patience......but it does sound good that he wants to walk. That definitely should help keep the constipation to a minimum. I know the communication thing feels like a barrier right now, but giving him this surgery gives him the opening to actually begin to develop that. It will come.

    Hoping that meeting everyone's needs gets easier so that you and Jen can get a little rest too. Thinking of y'all!

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  13. That's one of the toughest parts about getting through day to day life...lack of communication. It makes everyday, simple issues much more complicated. It must be even more so right now after the surgery. You and Jen will get in the swing of it though, and he'll keep improving and get stronger everyday.

    Hang in there...hoping every day gets better and better!

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  14. You guys keep your spirits up and it will pass on to your beautiful boy. Sooooo happy all went well and no seizure's is AWESOME news! I am very happy for your family!
    I wish you all the very best Ken.
    Take care,
    Tim

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  15. To other posters: It is so awesome to see so many here giving such good advice and suggestions. Thank you for sharing the benefir of your experience.

    I have no advice Ken, I just enjoy the moments you all are having through you. Thanks for what you have done through this blog: "The good, the bad, and the ugly." (It's time for Bennett and you all to enjoy the good for at least a little while!)

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  16. ya know - I keep coming back - not only for updates, but also to see that sweet, adorable picture of him sleeping. I love that picture.

    Sending our love and prayers for another good day.

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