The Amazing Owen
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One Step Closer...
Firstly, on the VNS front, Owen did have a seizure last Saturday.  We didn't expect that the VNS was turned up high enough to be able to stop seizures at this point.  We did manage to avoid convulsions this time, though it was weird because he threw up, we swiped the magnet a whole bunch of times and then he went to sleep.  We thought it was all over, but he woke up 45 minutes later all spaced out and then he would suddenly snap out of it, reach for his toys laughing and then suddenly go back out of it again.  And then he finally started having trouble breathing and we gave him the Diastat.  Definitely wierd.  He woke up the next morning just fine though so at least he wasn't shaky for days.  We go back tomorrow to increase the current again.

In more fun news Owen got a shiney new Crocodile walker just before Christmas.  He wasn't able to use it for a couple of weeks because of the surgery, but we have once again started putting him in it and he is quickly getting the idea of what this thing is for.

These two pictures were taken either the evening that he got the walker.  Daddy is holding his hands to get him to take a step:

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And he is standing up to play his drum:

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Those pictures were taken on New Year's Eve. We had to take a few weeks off for the surgery, and then we tried him again a few times.  Here he is on the 24th of January engaging in his favorite pastime - emptying out the utensil drawer in the kitchen:

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He is certainly standing more freely than he's ever done before!  And then here is today trying some outdoor locomotion:

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And finally, a little video of Owen getting much closer to moving it about on his own:



Not too shabby for his first time on gravel!
 
Post-Op and Snuggles!
So today was Owen's post-op checkup for his VNS.  All went well. We saw neurosurgery first and Dr. Grant said the incisions look good and Owen is cleared for school again. Then neurology came in and Dr. Gallentine checked the implant by putting a wand over his chest.  He said that the leads checked out fine and that it seems to be working properly.  He then reprogrammed it to increase the current a bit more.  We'll go back on the 31st to increase the current again.  He will increase it twice more (if I've done my math right on the milliamps) and then we'll waita while to see where the seizures are at.  On the Keppra and out of school and therefore away from the viruses that are his worst triggers, Owen was having one seizure a month. It was a big, nasty seizure, but not all that frequent. Therefore it will be hard to know for a few months if it is helping the seizures and so we'll level out for a while to see what happens.  If he keeps having them then they will increase the current again.  If the seizures level out then we will try weaning the Keppra.

So all seems well in VNS land and if all goes well at Owen's GI appointment tomorrow - we're still having lots of reflux as a side effect of some of his meds - then Owen will return to school on Thursday. He hasn't been in school for more than a few hours here and there since October.  Owen continues to sleep through the night - which has Mommy and Daddy dancing in the streets!

Owen and I actually went down last night because the weather was supposed to be bad this morning. I can remember when we used to stay in hotels and I could lay him down on the bed and take a shower and he'd still be there when I got back.  Now I don't dare to go to the bathroom without some real forethought. I turned my back for a moment last night to unpack things and turned back to see Owen sitting up in the chair looking quite pleased with himself:

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Or maybe he was just laughing because he was tickling his own foot - another little talent he has developed.

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I took the pictures with my iPod so they aren't the best, but you get the idea.

I also used to sit in the waiting rooms and crochet and read while Owen hung out in the stroller and napped. Not so anymore, now he's a boy on the move:

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He was cruising from one bit of furniture to the other and I had to wait for him to sit still for a minute to get a picture!  Certainly a lot less boring these days!

Today little Claire (from a few entries ago) was getting her stem cell infusion. This is always an exciting occassion and we got to see Dr. Kurtzberg again when she was done with Claire, which is always nice.

The last time I saw Claire was 12 days ago before she had been shunted.  I could only see her for a few minutes before they shooed me out so that they could do an MRI. Here is the picture from that day: 

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It was great to meet her, but I didn't get to hold her because she was a busy little girl that day.  Today I got in some serious snuggle time:

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And this time she was awake and alert the whole time I was holding her. She spent most of the time just gazing at me and I even got a few smiles!  (Yes, you can tell me that's just gas at this age, but I'm still gonna believe they were smiles!)

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After these pictures Owen and I went off to our appointments, but then I just had to sneak in one more snuggle before I left. 

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And finally I caught a cute picture of Claire giving us a big yawn!

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It was a wonderful visit.  I can't thank Amy and Brad enough for letting me share in the joy of their little girl.  And I thank Brad too for giving up some of his precious time with his little girl to watch Owen so that I could see Claire.  I have met so many wonderful families through this site and I cherish each and every one.

And so now we have the first family photo of Amy, Brad and Claire:

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I wish you well and I hope we see you again soon!

And finally another bit of great news that I just read a moment ago... Matthew is going home today and is doing well.  Really, what a great day!
 
One Week Since the VNS Surgery
It has been one week now since Owen's VNS surgery and what a week it has been!  I have hesitated to blog because you don't want to believe it's true.  You want to wait one more day just to be sure that it really is going to last.  But it has been a week now and it's time to spill the beans.

Owen has slept through every night of the last week.  Is it the VNS?  Is it the Depakote that we added the night before he got the VNS?  Is it a combination of both?  Who cares, OWEN SLEPT THROUGH EVERY NIGHT FOR THE LAST WEEK!  And that my friends, is priceless. 

And his mood. Oh his mood.  Owen has been happy without being manic, and angry without losing his mind.  I do believe he has been enjoying himself. 

We learned a few things by accident during this week too.  His throat was really sore from the breathing tube and he wouldn't eat anything solid for two days - thankfully his main seizure med, Keppra, is a liquid.  He would not take his Clonidine (for mood leveling) in the morning.  Without the Clonidine he did not take a nap in the morning at 9:30 am, which was making school impossible.  When he did finally take the Clonidine two days later, he took a nap again in the morning.  We stopped giving him Clonidine in the morning. He did not lose his mind like he had in the past.  We did learn that he needs his B6 though -which is given to help with Keppra rage. Owen is still not a happy camper when he doesn't have his B6.  The B6 really upsets his tummy so we are trying different times and different dosing to help, but he is definitely in a bad mood without his B6.

Whether it is the VNS or finally getting some sleep that has Owen in such a good mood is hard to know.  I do know that for 7 days now we have not had a manic swing.  The manic (way toooo happy with constant tics and insomnia) swings were always the worst for sleeping and he would have one every few days.  I can't remember the last time he made it 7 days without a swing into severely Happyland.

But wait, there's more!! 

Before the VNS surgery Owen had lost all of his verbal words, most of his signs and had not pulled up to stand for months.  He had regressed almost to infancy.  In the last week I have heard "mama", "dada", "light", "up", "more" and "eat" verbally.  I kid you not.  The signs have come back as well, though we aren't yet back up to the three word sentences that we used to have.  And look at where Owen spent most of his time today:

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Last night he pulled up to stand for the first time in so long it was almost as exciting as the very first time he did it.  And today he climbed up onto the couch - and everything else he could figure out how to climb on!

We've been seeing a lot more smiles out of Owen this week:

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And what is he smiling at?  See here what he was doing:



Yes friends, it has been a good week.  Next Tuesday we go down to have his incisions checked and to have his current turned up.  Whether or not this will last is anybody's guess, but I will say this - the VNS certainly hasn't done anything negative this week and I'll be thankful for where we are now which is so Blessedly better than it was a week and a half ago!
 
Cleared for Launch
Owen is doing well this morning and his neurosurgeon has cleared him to leave as soon as he is done getting his last dose of antibiotics - which should be finished infusing around 10:30am.  There will be the usual fussing about waiting for discharge, but we are hopeful that we'll be out before lunch. 
 
Surgery a Success and Welcome Claire!

Owen came through his surgery just fine.  Dr. Grant said that all went well and he was happy with the placement of the VNS.  The device is turned on with a very low current.  We will come back every two weeks for the next two months to increase the current slowly.

He is very shaky, but he has been sitting up and drinking and is looking more and more alert:

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And here is a picture of where they did the incisions:

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He's not quite his perky little self yet, but he doesn't seem to be in any real pain and is resting comfortably.

And in other great news, Claire was born today!  Yesterday this was Claire still in her Mommy's tummy:

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And now just down the hall from us is a brand new beautiful girl:

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I can't wait to meet her! 

So all in all, a really good day!

 
Surgery started

The actual surgery started at 11:35 am.  Should hear something more in an hour to an hour and a half....

 
Owen is Out
I snuggled him while they put the mask on.  He's out now and they are prepping him.  I'm going to go get some lunch.  I'll post when they actually start the surgery.
 
Meeting the Gibbs and VNS at Last!
It has been a suspense filled lead up to the surgery - again.  The day before yesterday I found that the insurance company had denied the approval for the VNS surgery.  They felt that we should try the resective surgery first.  Since that surgery requires removing the focal point for the seizures from the brain, and Owen's focal point is the entire right side of his brain, this did not seem like a good option to us.  After much scrambling by our neurologist and neurosurgeon and their staff the doctors were able to convince them that this surgery actually was the best way to go.

I know we had said that we were considering the possibility of trying the meds for a while longer, but he had a big seizure with 20 minutes of full body convulsions (even with two Diastats) last Sunday.  Even if the VNS doesn't prevent the seizures altogether, you can use the wand to shorten them and that is becoming increasingly important.  And it should help even out his mood.

So we are sitting in the waiting room.  We've talked to Dr. Grant - the neurosurgeon - this morning, signed all the forms, and now we're just awaiting our spot in the OR which should be in the next few minutes.  Owen is not minding the wait at all:

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He fell asleep out in the main waiting room and has stayed asleep while we've been checked into a pre-op room.

Last night I had the wonderful fun of meeting the Gibbs family.  Their daughter Claire is probably being born even as I type this, or will be very soon just two floors up from where we are sitting.  I met them through the website and since we were all here we thought it would be fun to get together for dinner.  Here is me, Amy and Owen (and Claire still snug in her Mommy's tummy)

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And a group shot of Amy, Brad, Owen and Claire:

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It was fun to sit and chat and I'm really hoping that we get to meet Claire before we leave. 

At the end of our visit I was walking out the door when I realized that Owen's drinking bear was gone.  Amy and Brad were so very kind to help me search high and low for it, but it was nowhere to be found.  So Owen and I made a quick trip to Kroger where I bought a honey bear and some straws to make temporary replacement:

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As you can see, he drank almost the whole thing this morning so it looks like we have something that will work for the next two days. 

After Owen's surgery we will be admitted overnight.  This is normally an outpatient procedure, but since we'll be working on the same side as his shunt tract they want to give him IV antibiotics just to be sure that the shunt is safe tonight. 

I'll update more as things progress today.  They say they'll be back in 20 minutes to bring him to the OR.  The surgery lasts for an hour to an hour and a half, and the prep will take 45 minutes and the cleanup usually takes a bit too. 
 
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