The Amazing Owen
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They declared him cleaned out and cleared for takeoff last night.  We got home about 7:00. 

As you can see...Owen was very happy about that!

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Mmmmm Jello
So, on Friday morning I went in to find that Owen's diaper was bright red - never a good start to the day.  He was also lethargic and heaving.  It seemed that perhaps Owen was missing the hospital Jello again.  When we got to the ER he was very dehydrated, which made no sense because he had been drinking normally the day before.  Blood tests were all out of whack - white blood cells were high, clotting factors showed that he wasn't clotting at well as he should have and an ultrasound showed that his intestines were swollen.  Oh, and he was pretty constipated too.  Looks like his intestines were absorbing all the liquid in his body and using it to create swelling.  They have lots of cultures being sent out for testing and we had X-rays and an ultrasound.  We found that his blood was not clotting properly and Vitamin K was administered.  

So two days, several bags of fluids and a boatload of vitamins later things are looking up.  His blood work is back to normal and he's feeling better.  They are doing a clean out this morning and when he is poo free we can go home.  

Here is a picture of Owen from last night.  He may be in the hospital but that doesn't mean he doesn't need to keep up with his peeps!




Hopefully he will poo soon and we'll be able to go home today. We'll have a fair bit of testing to do in the next week or so to be sure that there isn't an underlying problem that caused this, but for now we're doing much better!
 
Thanksgiving Tradition

So once again we have made it home the day before Thanksgiving - another narrow miss on a major holiday but I'm not greedy, I'll take it! 

If you are busy with Thanksgiving and just want the overview, here are the bullet points:

  • EEG showed no seizure activity (WOW!)
  • Poo backed up again - think it might be slowing down the shunt causing our sleepiness
  • Admitted to hospital for clean out, hopeful the sleepiness will go away now
  • Home yesterday afternoon, now belly pain free and waiting to see if he will stay awake during the day
  • There is a cute picture at the bottom
If you want the long winded explanation with humorous bits and detailed explanations read on:

So when last I posted we were starting our second EEG to check out the long stretches of Owen not being able to stay concious for more than a few hours.  It turned out to be the worst week ever to have an EEG because for a change Owen did very little that we were worried about.  He had had a sinus infection starting the in the middle of the previous week and we had put him on antibiotics for it and rather miraculously we had a solid 7 days with no Ativan and no unexplained 5 hour naps an hour after waking.  We thought we had the answer, maybe he had been fighting a little infection (that didn't show up on the blood tests that we had done in the first week of the sleepy issues) all this time.  I emailed his neurosurgeon telling him that maybe we had found the answer.  Dumb@$$.  I should have remembered that Owen has a pyschic link to Dr. Grant's email account and within an hour of sending the message Owen fell asleep on the couch.  Luckily this was the last day of the EEG so if the sleep was seizure related we should have it on the recording. 

Meanwhile (because there is always more than one thing going on with Owen) we had begun to have poo issues again.  When we last increased his Depakote we immediately began to see a decrease in the daily output.  Right from the beginning we began evasive manuevers and increased his Miralax and number of enemas.  Apparently it wasn't enough.  By the beginning of last week it was obvious that we had lost the battles and were close to losing the war as well so we shifted into high gear with two enemas a day, magnesium citrate and senna added into the arsenal.  On Monday though we realized it was time to run up the white flag and we headed in for an x-ray of the belly.  Sure enough, he had two areas of "very dense matter" as the GI put it.  We were admitted for a clean out. 

So on Monday afternoon we were in the hospital changing diapers every half an hour or less, waiting for the results on the EEG, and three days into another sleepy cycle.  We had a lot of hopes riding on the clean out.  You see we had finally gotten the results of the EEG and if you can believe it, they saw NO seizure activity.  Now that is a small miracle in and of itself because we aren't used to hearing that with Owen, but it also left us with no explanation for the sleepy cycles.  We had one last hope - the tubing for Owen's shunt ends in a big coil in his abdomen.  When you get a backup of poo the intestines expand to accomodate the situation and they can actually expand quite a lot.  This expansion can push the intestine up against the tubing causing a kink which can slow down the flow of CSF, mimicking a shunt failure.  As the mass moves through the intestine the shunt will intermittently kink and unkink so the symptoms will appear and disappear seemingly at random - which is exactly what we are seeing. 

The clean out was successful and at the very least Owen is no longer in constant pain from his belly.  It is going to take a while to tell if the sleepy cycles are over.  He has slept a lot in the last two days, but he just got home from the hospital yesterday afternoon and he has a nasty cold so we need a few days of normalcy to tell if we are in the clear or not. 

So for this Thanksgiving we are thankful that we are all home, that Owen is not in any pain and that my parents are now only 15 minutes away to visit for Thanksgiving rather than 12 hours!

I'll leave you with this recent picture of Owen:

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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. 
 
It's All in the Details
A few people have mentioned some details that I have left out of my posts.  I feel somewhat like our local news people that tell you about an exciting new store opening up but don't bother to tell you its name or where it's located.

So, to clear up the confusion - we are home.  We came home late Sunday night after the seizures.  Owen has not been admitted for his pneumonia, we are hopeful that we caught it early enough that lots of rest, fluids, antibiotics, humidifiers and warm air will take care of it.

Owen's neurologist wrote back to us this afternoon and said that he thought it was a good idea to put Owen back on the Keppra until the surgery.  We didn't like the side effects of the Keppra, but we hopefully have a strategy to minimize them this time.  We didn't like the side effects of the other meds we tried either, but at least the Keppra had the added value of actually stopping the seizures.  We started him on it tonight.

I am more at Peace tonight.  We had wished to have the surgery sooner but you don't always get what you wish for.  We have a plan, and that's just the way it's going to be and so that's that.  Time to move on to other things that I can actually change.
 
I forgot to mention
That Owen is now resting peacefully in the ER. His lungs have cleared and hopefully his temp will come down.
 
No Surgery for Owen Tomorrow
We were on our way to Durham for Owen's VNS surgery tomorrow when he had a pretty nasty seizure. After 25 minutes I got him to cough enough to clear what he had aspirated, but then he started seizing again. Two seizures in 25 minutes and his core temp crashing = trip to ER. Owen's temp is 101.6 so he is clearly sick and therefore they won't do the surgery tomorrow. We never made it to Duke, we're still in Roanoke waiting to see if the Tylenol brings down his fever.
 
Seizure Study - Up, Down, Up

I know I haven't blogged in a few days, but entries that read "Today he absolutely failed to have a seizure" get boring after a while.  Then last night we had an "event".  Those of you on Facebook are probably wondering about the "Yippee" entries and then the completely, horribly depressed entries, and then the "Yippee" entries again - all about the same event.  So for those who are wondering about that and for those not on Facebook who are just wondering where we've disappeared to, here's the scoop.

After several more days of nothing useful happening we were sitting here yesterday at 5:30 pm thinking that the dinner trays should be arriving soon.  Owen was in his crib playing and laughing at a book.  I was crocheting and Mom was reading a book.  The dinner trays came in and I said "I'll finish this group I'm working on and then we'll start the dinner proceedings".  I look over and Owen is still happily playing.  I finished my little group, maybe two minutes, and then I get up and walk over to the trays and then I hear it - the sound of Owen throwing up which means seizure.  Now for the last 10 days they have been warning us that the first seizure off his meds is likely to be "THE BIG ONE".  We pushed buttons, called for nurses and sprang into all kinds of motion. 

Owen's eyes were definitely wandering, he was not responsive and then he fell asleep.  No shaking, no oxygen level drop, he just went to sleep.  Which left a whole room of doctors and nurses and Mommy and Grandma saying, "Was that it?"  No Diastat, nothing - he just went to sleep.  So now we start asking, "Was that really a seizure?" It certainly looked like the normal start of one, but generally they don't end unless we intervene.  Neurology was on the phone during the "event" and said they would look at the EEG and be down to tell us what they saw.

Two hours go by.  Owen is still completely out and nothing we do will wake him up so that he can eat his dinner and not wake up at 1:00am.   No neurologists have shown up.  The daytime shift had gone home before the event and it was the nighttime on-call guy that we were waiting on - otherwise known as the Fellow who is never allowed to sleep until he can become an Attending.  The nurse pages neurology, another hour goes by. She pages them again and some random doc comes in to tell us that neurology is looking at the EEG even as we speak and will be by shortly.  Another 45 minutes goes by and the nurse pages again.  Finally some guy I don't *think* I've ever met comes in and announces that they found nothing on the EEG.  He says that the Attending (our normal neurologist, Dr. Gallentine) will check it more thoroughly in the morning but that they didn't see anything at all at the time we pushed the button.

So our excitement over the idea that we might have finally caught a seizure on EEG evaporated and we were all pretty bummed.  I went to bed in a pretty foul mood.  Owen woke up at 1:00am and wanted food.  I finally got him back to bed around 3:00am and dozed on and off until 8:30am.

This morning the lesser trained minions came in one by one all excited saying that they heard he had a seizure.  And I had to explain that the nighttime guy seemed to think that there wasn't anything there.  But they all wanted me to describe the "event" in detail and so I did.  Then at about 10:00 the man himself, Dr. Gallentine, comes in and says "Yippee, we got a seizure!" (And yes, he is the type that would say yippee - he even did a seizure dance with us one day in hopes of bringing one on).  Somewhat perplexed I asked him then why they said no last night.  And here's the deal: we have always assumed that the vomiting and such was the BEGINNING of the seizure, and so did the nighttime guy.  So he took our button press as the beginning of the seizure and found nothing there.  Dr. Gallentine however thought this morning to go back in time a bit and it turns out that it was the END of the seizure.  It was a very mild seizure, which was obvious from what we saw, but it was definitely a seizure. 

So what did we learn?  The first thing is that Owen is not a candidate for surgery to stop the seizures.  What you hope to see is a single point in the brain where the seizure begins.  Then you watch several more seizures to see if they all begin in the same place and if you you may be able to remove that little spot that is causing the seizure.  Unfortunately it is rare that kids with lots of brain damage have a single focal point for their seizures and Owen is no exception. A large portion of the right side of his brain was involved even with this minor seizure and so there is no little focal point to remove.  This also means that we don't have to try and catch more seizures because we already know that he can't have surgery.

We were somewhat intrigued however that rather than THE BIG ONE we had the World's Smallest Seizure with him off the meds.  This really makes us wonder whether or not we should put him back on any meds.  Owen has gone back to being the happiest boy ever in the last week without meds and I don't want to lose that.  However the neurologist really believes that all of the extra background stuff  he is seeing since Owen came off the meds is putting him at a pretty high risk of big seizures.  He really wants us to try one or two more meds before giving up on them.  However we are going to start very small and he does not feel that Owen should ever be put on a cocktail of drugs like he was before.  Some kids are on as many as 4 or 5 meds at the same time, though 3 is more common.  However for Owen the side-effects seem to really multiply quickly and so it just doesn't appear that he can tolerate that. 

So, we are trying him on Depakote starting today.  He's going to have two doses today and then after his dose in the morning he can go home.  He said he was also going to start looking into what the possibilities are for a ketogenic or Modified Atkins diet might be for a kiddo with allergies to milk and eggs, which are the main ingredients in those diets.  Finally, if we try a few more meds and the diets if they are even possible for him and they don't work then we will start thinking about implanting a Vagus Nerve Stimulator. You can Google that one for now and I'll give more details later, but it is essentially a pacemaker for the brain. 

It has been a rough 10 days and we weren't sure it was going to be worth it, but in the end we got what we came for.  And I also got to see my happy boy again and now that I know he's still in there I'm not going to give him up.  And since we didn't have THE BIG ONE his doc is willing to accept that he might well be someone for whom the meds actually make the seizures worse so we'll be keeping an eye out for that.

So, tomorrow we go home!!!!!  That will be sooooooo nice to get back to our own world again.

I do have a few pictures that I have taken over the last few days to make up for all of these words that I have typed!

Happiness Is....

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a smiling Mylar balloon from Grandma!

We did some more schoolwork to pass the time.  We got some construction paper and a glue stick from the Child Life room and I cut out shapes to glue onto some black paper.

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For an hour or so in the afternoon we could take Owen off the pulse-ox (still attached to the EEG though) and let him climb on the little bed that they give parents to sleep on.  He loves to look out the window:

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And now we are just starting to pack stuff up to get ready to leave tomorrow! 

 
Seizure Study - Days 5, 6 & 7
We're still here!

Those of you on Facebook know that we had a rough evening on the night of day 5.   Owen had blown yet another IV and they were placing his 4th one.  Despite me asking repeatedly for some kind of sedation to take the edge off the IV tech proceeded saying that it was not possible to sedate for an IV.  It was his 5th traumatic procedure in 5 days and it was getting to be too much to have 4 people holding him down while he screamed.  He also planned to put the IV in the top of his hand, which would require his hand to be immobilized.  Owen is deaf and uses his hands to sign - even with his cochlear implant he still signs more than he speaks.  I also pointed out that he would no longer be able to pull to stand up and would have difficulty feeding himself.  But the tech said that it was the only viable site he could find. 

By this time he has been poking and prodding to find a site for like 10 minutes and Owen is just frantic.  What I should have done was to kick the tech out at this point, by body tackle if necessary, but for some reason that I will never fathom I did not.  He placed the IV in the top of his right hand.  He then placed his hand flat on a board to completely immobilize it - with me standing there telling him how this isn't going to work the whole time.  He had the hand secured to the board with nothing covering the actual line - it was just taped down.  When he went to take the tape off the old line - which we had left in until we had a viable new one - Owen brought his arm up to bite his wrist, which is a nifty new habit that he has picked up, and nearly bit through the line. And then Owen starts staring off into space and then goes to sleep while they are taking off tape.  I'm just a touch concerned about that, but back to the tech - So I explain that he will have to find something to put over the top of the line.  At this point the tech just walks out of the room.  I wait a couple of minutes to see if he has gone to find something.  When he doesn't return I walk out into the hallway and find him writing in Owen's chart.  I ask him what his plan is since we still have an unprotected IV and he says, "Unprotected, in what way Ma'am?".  I said, "Well, you just saw him try to bite through the line, that's probably not a good thing."  To which he replied, "That's the nurse's problem" and walked off the floor.

So Owen is now passed out cold, the line is unprotected and the tech is gone.  The nurse jumps into high gear and finds anything and everything that might cover and protect an IV.  We spend a half an hour trying different things until we manage to get something on him that looks like it might actually last through the night.  And now Momma Bear is downright pissed off.  They worked on my son for so long that he actually passed out.  They placed a line in such a way that he wouldn't even be able to talk to me.  The charge nurse was called in and told that no one was to touch Owen again except to flush the line until neurology came by in the morning.  No vital checks, no pokes, no prods, nothing.   It took my Mom, my husband and my friend Jill to talk me out of my tree so that I didn't head down and find that tech and do something painful to him.  I also had to calm down enough to not just pack Owen up into the car and head home that night. 

The next morning I told neurology that they had to either sedate him and move the IV to a more appropriate place - he had a leg that still hadn't been used - or they could provide medical transport to another facility where they might actually care about what they were doing to the kids.  You see it is somewhat dangerous to move Owen right now as they have taken away all his meds.  We won't know until he has another seizure whether or not having gone off the meds will cause it to be a much more severe seizure.  We could get halfway home and find ourselves in real trouble on the side of the road.  The doc was somewhat shocked at what happened.  He ordered the IV to be removed and to rely on Diastat in the event of the seizure, which seems reasonable considering Owen has always responded well to Diastat.  This way the only thing Owen has attached to him is a pulse-ox and the EEG, which is a manageable set of things that don't really impede his normal movement.  He also wrote orders that no more procedures are to be done that involve more than minimal pain or restraint without sedation.  We're not talking about knocking him out completely - just giving him goofy juice (Versed) or chloryl hydrate to take the edge off. 

So we decided that we need the data too badly to leave now and wait a few months to get on someone else's schedule.  And now that Owen is finally comfortable and being treated as a healthy person waiting for a seizure, rather than a critically ill boy needing round the clock care, it has become a more bearable situation. 

This evening we had something that we wondered if it might not be a small seizure.  He was very tired - Daddy and Sister came down today for a visit and Daddy really wore him out with playing.  He was standing up in the crib and his eyes started to roll back in his head and he started losing his balance.  I jumped up and helped him to sit down where he promptly closed his eyes and went to sleep while sitting up.  Now long time readers of this blog will know that Owen's ability to fall asleep anywhere is a bit of a running joke.  I have pictures of him asleep on top of a therapy ball while his therapist was bouncing him, falling asleep in his stander, etc.  And yet it still doesn't seem quite normal to fall that much asleep while upright.  So I logged it as a possible event and we'll see if there was anything tomorrow when they read the EEG.  Either he had a small seizure, or he just isn't bright enough to sit down when he's that tired.

We also met with his normal neurologist today for the first time as he is now on floor rotation.  This was an enlightening experience.  Every time I have asked the neurologists whether or not they have seen anything they just say no, not a thing.  Well today Dr. Gallentine came in and said well it isn't a clean reading either.  I was a bit shocked and explained that Dr. Smith had told us that he hadn't seen anything.  You see Dr. Gallentine specializes in epilepsy and seizures but I am now finding out that Dr. Smith is more of a general neurologist.  So Dr. Gallentine took the time to really explain exactly what he is seeing.  He says that Owen's EEG does show what he called spikes and sharps which are two different abnormal shapes that are showing up now and then throughout the day in an area of the right side of Owen's brain.  These aren't seizures and they haven't seen anything that looks like a seizure since he got here, but these abnormal bursts could potentionally lead to a seizure.  He also said that they have seen more of these shapes since he went off the meds completely.  This seems like information that might have been useful and does mean that perhaps the meds were helping somewhat.

So we still haven't had one of Owen's typical seizures and are therefore still waiting to see one.  It has now been seven days since his last seizure and that means the clock is now really starting on his next one because they have never been closer than seven days apart, but they are often between seven and nine days apart.

And now for the pictures.  Just because Owen is out of school doesn't mean that he doesn't have any work to do.  They have encouraged us to keep him doing as many normal activities as possible in a crib and chair to keep his brain as active as possible.  Ms. Pat, Owen's special ed teacher, was kind enough to gather up some stuff for him to bring on the trip.  Here he is putting some sticky stars on a piece of paper on his slant board:

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And yes, Ms. Lori - those stars have glitter on them!  We also tried out the cool easel Ms. Pat got for him:

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Owen's sister Sammy and his Daddy came down for a visit today and it was a nice break.  Grandpa came down on Friday and these visits have really helped to keep us from getting too stir crazy.  In honor of Halloween Sammy had put on a dress as part of a fairy costume, but she forgot her hat at home.  I brought a skeleton costume for Owen figuring that we would still be here for Halloween.  Sammy climbed up into Owen's crib to take a picture:

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Absolutely priceless!

And now we just go back to waiting!
 
Seizure Study - Days 3 & 4
So, we're still here and no seizure recorded, and we're still having no plan to leave anytime soon.  After many discussions and much growling we were able to get some things settled yesterday.  The annoying cardiac harness was removed - Owen does not have cardiac problems and no amount of tape/adhesive/gooey stuff could keep the leads for it on.  The IV was re-wrapped so that it could be checked without removing bandages everytime.  I think we have things down to a manageable situation now - it was a much more peaceful night.

So far the most interesting thing we have learned is that they have seen absolutely no seizure activity, even when they removed nearly all of his meds.  As of 1:30pm today all of his meds are gone now and we'll see tomorrow morning if that produces anything.  I'm not actually all that surprised that they haven't seen anything yet as we have had many EEGs done in the past (4 I think) and none of them has ever shown anything except one that was taken while he was post-dictal (knocked out cold by a seizure) and that one just showed some slowing of brain activity.   This is why we've had to go to long term monitoring, we aren't going to learn a thing until we can catch him in the act.

They say that they normally want to catch 5 or 6 events in a study, but I can't see how we can do that when it's usually at least 7 days in between our events. 

This afternoon they had a Halloween Parade for the kids here.  They came around and gave all of the kids costumes and then lined them up for a parade around the two peds floors.  Owen couldn't leave the room because he is tethered to the monitors, but they have a long cord and we were able to wheel him out into the hallway so that he could watch the other kids.  It was the cutest thing ever!  And since Owen couldn't go and visit all of the stations that they had set up for trick-or-treating, one of the child life specialists brought back a bag for him. 

I really wished I could have taken pictures of some of the other adorable kids, but then you'd have to get permission to publish the pictures.  But I was able to get a few of Owen in the Buzz Lightyear costume that they brought for him:

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As you can see - he's in a really good mood.  In fact that really describes the situation since they have taken away all or most of his meds - he's so much happier!  It had been almost impossible to get a picture of Owen smiling in the last half a year, and today I had so many to choose from that I can't show them all (and get this update done before dinner!).  It has been a breath of fresh air to have such a Happy Owen.  He was waving to the other kids as they went by in their costumes and seemed to enjoy the break from his crib.  Now we go back to the waiting game...

Oh, and yes Sammy - we'll save some of the goodies we got for you!
 
EEG Study - The First Two Days

So on Monday we headed south to Duke for a prolonged EEG study since we've never been able to catch a seizure on EEG. I've explained the reasons why we needed to do this in previous posts, so I won't bore you with them again.

It took two months to get the appointment.  My parents drove 12 hours to come down and help us.  The techs in the Epilepsy Lab were warned repeatedly that Owen cannot be without liquids for very long, so if they are going NPO so that they could place the electrodes under sedation they had better be sure to be on time.  He dehydrates very quickly and then his system gets stressed and then we are at risk of seizure or having trouble waking up from the sedation needed to get the electrodes on.  And, of course, we waited and waited and waited while they couldn't get a nurse to sedate him and could't get the process started.  We didn't wait in the epilepsy lab where there were beds or anything.  We waited out in the main admissions area for Duke Hospitals.  So, when things started going downhill fast - as we told them it would - we were in the lobby.  Instead of being hooked to leads recording the event, we had to find a clear spot on the floor for Grandma to lay down her jacket so that I could administer the Diastat when he had the seizure. 

I'm fairly certain that everyone reading this blog probably heard me yelling nasty things at the lab people no matter which state or country you live in.  You see, Owen has never had a seizure closer than one week apart, so it is quite likely that their inability to plan ahead far enough to have a nurse available for an appointment planned two months in advance means that we all came here for nothing, or that we will be here for a very long time before he has a seizure.  Momma Bear was slightly miffed.  Miffed enough to call patient relations and file a complaint while we were sitting in the ER.

Rather amusingly if you have a medical emergency inside the hospital when you haven't been admitted, you still have to call 911 (or the nice lady at the admissions desk does) and then they have to admit you to the ER, even if you would not have even called EMS if you had been at home.  I feel very bad for the others in the waiting room as I had to rip off his diaper right there and then to administer the diastat - which is given "up the bung".  We don't have much time to spare as if we let his seizures get up a head of steam they get much more severe.  He started to desat (as usual) and I had to break out the oxygen tank right there on the floor next to the big fountain.  By the time we finally got admitted to the floor to get the leads hooked up it was after 6:00 pm and they didn't finish all their admissions stuff until 10:00 pm. 

So now we sit and wait.  They have taken away two thirds of his meds in an attempt to induce a seizure.  It has been a bit heartbreaking in a way - during the long span between the doses he becomes so much more normal in his behavior.  He isn't biting everyone who tries to touch him.  He isn't frantic.  And then they give him his one dose and suddenly you can't even flush an IV without someone sustaining damage.  Getting a glimpse of the more evenly behaved boy that I remember has made it much harder to stuff the meds in his mouth at lunchtime.

On a more amusing note, I have some pictures of Owen.  I think the hat that they put on to keep the EEG leads on makes him look like a teletubby - maybe LaaLaa when his head swirl is done up right, though I've just taken to calling him Po for the week. 

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The hat actually fits like a ski mask and since Owen is so used to wearing a hat all the time to keep his cochlear implant on, he doesn't seem to mind it.

He has also reached another one of those odd milestones.  For the first time he is able to climb up and stand in the crib at the hospital.  He likes to bang the big plastic dome that they have to keep kids from falling out.  I don't think his neighbors (they are all private rooms here, so at least there is a wall) probably enjoy it as much, but Owen sure has a good time.

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As my friend Amy pointed out, it looks kinda like a space ship - I think we'll call it the USS BubbleCrib!

So now we've settled in for the long haul.  We've brought every toy he owns, and he seems content enough for now, though he does look out the window and say "Out, out" a few times a day.  We can't leave at all because we might miss a seizure and he has to be tethered to the continuous monitor.  But we're making the best of it and we'll just see how long it takes to get a seizure.  It's a very weird thing to say but, "Hey Owie, hurry up and have a seizure please!"

 
A Milestone of Sorts
We are home now, and I thank everyone for their well wishes. Owen is up in his own bed asleep now. 

This was a pretty standard seizure for Owen with the whole range of vomiting, then shaking, 2 doses of Diastat and then trouble breathing.  The bummer this time that landed us in the hospital instead of waiting it out at home was that he aspirated a bit whilst he was reliving his dinner.  They were afraid this might cause an infection in his lungs and so gave him an antiobiotic by IV while he was still unconcious and couldn't take it by mouth. Nothing had materialized by this afternoon though and he had cleared his lungs pretty well by coughing so they sent us home.

The seizure started at 7:18 last night. This was Owen at 9:30 when he was finally breathing on his own so I felt I could take a picture with my phone. He is still quite unconcious and a long ways from waking up, but resting comfortably:

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I finally got to lay down to rest at about 2:30 am.  This is Owen at 3:30am looking for food:

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Huge kudos go out to Miss Tessa today for not only taking care of Sammy while Owen was in the hospital, but also cleaning my house, feeding the dog and doing the laundry while I was gone.  Daddy was busy helping his Daddy who is also in the hospital and so Tessa gave us all a hand.  She gets a whole sky full of gold stars for the day!

And now onto our "milestone".  We have spent quite a rather lot of time in the hospital with Owen and during that time I have watched other kids being wheeled around the floor in red wagons, which they seemed to enjoy doing. For all of our previous stays Owen has either been too sick to be allowed out of the room, or even if he was well enough he couldn't sit up well enough to ride in a wagon anyway.  Well, today Owen was essentially fine for most of the day, they were just watching him to be sure he was OK.  And he is also now quite capable of riding around in a red wagon.  So, instead of spending a long day trying to keep an active child happy in crib, we went exploring instead in our little red wagon:

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He doesn't look that happy in the picture, but those of you who know Owen will recognize that he is making his sign for cookie.  Mommy had a bag of animal crackers in her hand and he felt that I should be focusing more on giving him animal crackers than on taking the picture.  Why do I have animal crackers?  Because they delivered french toast for breakfast and cheese pizza for lunch.  Owen is allergic to eggs and milk, so we opted for some these instead.  So, maybe it's not a dream come true, but it was nice for him to be able to get out of the room and roam around today - it made the time waiting for discharge go by much more quickly.
 
We`re Outta Here!
Owen is feeling much better. We are headed home.
 
Why? Because Hospitals Are Fun
Owen missed the hospital food so much that he decided to have a seizure last night. He aspirated a bit with this one so we have to stay til this afternoon to make sure his lungs are OK. He is awake and alert this morning though so we are hopeful that we`ll be able to go home this afternoon.
 
Seizures Suck

I want a T-shirt with that printed on the front.  So, only about a half an hour after Owen's aide Tessa said, "The trileptal really seems to be working - he's even been sick and no seizures." - he had a very nasty seizure.  I mean, she even knocked on wood afterwards! 

And yes, this has a happy ending.

This was the worst one since last summer when he started the seizure meds - he did the whole array this time: first he vomited (always the way Owen's seizures start) then he got the whole body shakes, and then he lost conciousness and the ability to breathe more than once every 20 - 30 seconds or so.  So we got out the oxygen and the Diastat.  The second dose of Diastat was able to stop the convulsing, but didn't bring back his breathing so we headed for the ER.  We live out in the middle of nowhere and so we only have a volunteer rescue squad. These are incredibly dedicated people who care very much - but they can only come so quickly and if they are on another call or there is bad weather it can take quite a while for them to come.  It was snowing like crazy and our driveway only has a small path down the two feet of snow that have fallen - so we opted to head for the ER ourselves.  We did call 911 and tried to get them to meet us with an ambulance, but that appears to be impossible in our county.  Just a few minutes before arriving at the hospital he started breathing on his own again - it was like a lightswitch turning on: one second he wasn't breathing and his O2 was 83% with oxygen and mouth to mouth, and the next he's breathing fine at 100%.

We found out a few things with this incident.  First, oxygen tanks are great to help out, but when they stop inhaling it doesn't do much good.  Tessa wins the gold star of the year award for doing mouth to mouth for a half an hour straight on the way to the hospital.  Mommy was driving - Tessa comes recently from North Dakota and doesn't live in the area where we were going to the hospital so it seemed better for me to drive and get us there as quick as we could - Tessa, of course, is CPR and first aid certifed and now she can add having actually done it to her resume. 

So, realizing that the oxygen tank wasn't enough - I requested that we come home from the hospital with an Ambu Bag.  Mouth to mouth is effective, but it is difficult to keep it up for very long and it is second hand air so the oxygen content isn't very high.  We had the oxygen cannula still on Owen while she was doing the mouth-to-mouth.  Ambu Bags can use either room air or you can hook oxygen to them and you won't pass out while administering it.  A not-so-nice charge nurse at the ER stated that no parent should ever have such a thing and that only an EMT should be allowed to use it.  Fine, I'll just hire one to live next door to us, or I'll take the EMT training and hope that in the next however many months that takes (I checked, the next course locally isn't until the summer and it's 120 hours of training) that he doesn't have another seizure.  They also said that legally they could not give us an Ambu Bag because it is a restricted medical device.  She also gave us a dressing down for not using an ambulance - clearly ignoring the fact that one couldn't actually get one to us.  After much yelling and nastiness, we left without an Ambu Bag. 

Now given how much of a stink they put up at the hospital, I figured the only way we would get one would be through a "Don't Ask, Don't Tell" site on eBay.  As it turns out you can order one on Amazon.com for $20.  Anyone can, no prescription, no big expense, just $20 from a reputable online company.  And if you'd like the training on how to use it (you can actually pop a lung if you aren't careful) you can just call your local Red Cross.  I did and for $80 anyone can come in off the street and get the full CPR, First Aid, AED and Ambu Bag training.  I already have the CPR and First Aid, but I let my certification lapse due to the fact that I use it so often that I haven't forgotten what I learned the 5 times I took the course previously.  No need to be an EMT or paramedic, you just go sign up.  I'm going next weekend on Saturday and taking the course. 

So, here is a blurry picture of Owen at the hospital yesterday when he finally woke up after the Diastat wore off:

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We came home after just a few hours.  They didn't really have to do anything for him this time as he didn't need to be intubated - but when you live this far away and they aren't breathing, waiting until you know 100% that they will not need the breathing tube means you have waited too long for the breathing tube to help them. 

The neurologist has changed his seizure med again - we're on Zonisamide now.  Let's all hope and pray that this one does the trick. 

Most days I say to myself wow, I'm really glad we don't have to deal with x, y or z medical condition as I read or hear about something new.  I often say things like, "It would really suck if Owen had to deal with ...".  But on days like yesterday I think - Our situation sucks quite enough Thank you! But we are still Thankful that once again we brought home our little boy intact and well so you won't hear me complaining - or at least not very loudly :-)

 
Our Last Evening In Dallas
First we'll start with the morning picture of what Owen's head looks like today:

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Each day the swelling goes down more and more.  There is still a good bit of fluid at the back of his head, but it doesn't seem to hurt anymore.  In fact Owen spent most of the day feeling around on the back of his head and squishing it.  It's just got to be weird!  Owen was much more energetic today.  On Saturday he slept most of the day, on Sunday he took two very long naps and today he only took one short nap.  He hasn't run a temperature today either for the first time. 

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Tonight is our last evening here in Texas.  Owen was getting seriously bored with being in the hotel room and we thought that he was up to a little outing.  So we met his Uncle Tom and Cousin Ryan at our favorite Texas restaurant - Uncle Julio's.  Read the family blog in about a week when I finally update it if you want the whole background on why that is our favorite spot, but for now I'll just post a few pictures so you can see how Owen is doing.  He spent most of the time at Uncle Julio's doing his "happy dance".  I have a great little video of it, but alas I do not have my video editing software with me.  So here's a still picture to give you the general idea of him dancing with Daddy.  He waves his arms and giggles alot:

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I'll post the video when we get home.  It was a nice visit and it was great to get out of the hotel for a little while.  It was really awesome to be able to have a chance to reconnect with my brother-in-law and nephew who I haven't seen in two years.

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Uncle Tom and Cousin Ryan (along with his Aunt Lori and Cousin Shannon who are still at home in Colorado) gave Owen a stuffed Curious George.  When we got back to the hotel we put it out on the bed.  Owen immediately crawled over to it and put his head down on it with the world's biggest smile.  I didn't get the camera out in time to catch the smile, but it's so awesome to see him able to motivate himself like this:

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I know that it's going to be a little while before I can post again once we get home and get back into the normal daily routine, so I want to make sure I say my Thank You's now.  A surgery like this is requires a great deal of logistical planning and a tremendous amount of help from others - it just isn't possible to do it all on your own. 

So, we'd like to thank Grandma and Grandpa Q for moving down to Virginia for a couple of weeks to take care of our daughter Sammy.  Thanks Mom for helping me get the house clean and laundry done before we left.  Without their help this simply wouldn't have been possible.  And we thank Uncle Richard and Aunt Christie for helping with Sammy while we were gone too.

We want to thank our amazing daughter Sammy for being such a good girl for Grandma and Grandpa.  I also wanted to share some of the things that she did for us.  We think so much about the child that is going through the surgery, but we have to remember that it is difficult on the siblings as well.  As worried as she was about her brother, she was also worried about her Mommy and Daddy.  At one point I had commented that it actually gets pretty boring just sitting and watching a kid that is sedated and recovering.  She didn't want us to get bored, so she spent countless hours making worksheets for us to do while Owen was sleeping:

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She hand-drew about 10 pages of these worksheets that she copied from books that she has, or made up on her own.  It took her days of hard work.  Sammy is an amazing little girl and we can't wait to see her again tomorrow.  Thank you Sweetie for all your hard work - we were never bored thanks to you!

Owen's aide Tessa gets a big thank you for taking such great care of Owen in the weeks before we left so that I could make the countless phone calls and fill out the miles of paperwork that were necessary to make this happen.

Of course Uncle Tom gets a huge thanks for ferrying our stuff around and helping to provide distractions while Owen was in the hospital. 

The pictures on these updates have been made possible through the kindness of my bestest and oldest friend Val who rushed this memory card reader:

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to us when she found out that mine quit working while we were in quarantine and couldn't get out to buy a new one.

The doctors and nurses and support staff here at Medical City have all been amazing and worked so very hard to make both Owen and us as comfortable as possible and did such an amazing job with his surgery.  We couldn't have asked for better care. 

We received great support from Owen and Sammy's teachers at Tall Oaks Montessori school as well and we very much appreciate that. 

Finally we want to express our deep gratitude to everyone who prayed for Owen or sent him well wishes.  The constant flow of support from friends and family through email, blog comments and phone calls really made a huge difference.  We know that all of these positive thoughts contributed greatly to the success of Owen's surgery. 

I'll still be posting in the days to come of course, but I really wanted to make sure that these thoughts of gratitude were not lost in the hussle and bussle of everyday life.  With all of our hearts - Thank You!
 
Having a Good Day
Last night Owen snuggled up with his favorite bear right after his bath:

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Today has been a good day.  This was the view of Owen's head first thing this morning.  He's looking so handsome with the extra hair being trimmed. 

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His head still feels like a waterbed, but the swelling is going down quite a bit every day.  Owen seemed much less sensitive to his head being touched today, and he was in a good mood so we decided to take him out for a walk.  It was in the mid-seventies here today and partly sunny so we just couldn't resist getting him out into the fresh air.  Just two blocks away there is a Boston Market.  Daddy really likes Boston Market and we used to go when we lived up in NY, but there aren't any in VA so we decided to walk there and pick up some lunch. 

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Tonight he's sitting up in his chair just babbling away and having a good time.  He has only taken two naps today and so has been awake most of the day, for the first time since the surgery.  Owen's mobility improves by the hour it seems.  His crawling is already better than it was.  This afternoon he woke up from his nap, crawled across the bed and put his head in my lap.  He's never done that before because he's never been able to get his head that far up.  It was the sweetest thing ever.  Setting up surgery half a country awake and dealing with the stress of major surgery - a complete hassle.  Having your son crawl over and curl up in your lap - priceless!

I also wanted to send out a quick shout-out to our daughter Sammy.  I know she's been reading these updates with Grandma and Grandpa and I wanted to say Hi!!!  We miss you and can't wait to see you on Tuesday.
 
Catchin' Up
All is going well with the recovery.  I realized that I have a bunch of pictures from the last few days that I haven't had a chance to put up.  Our laptop is rather antiquated and it takes some real time to process pictures on it and I just didn't have time yesterday.  So I'll pick up where I left off with the pictures as I tell what's been going on.

I posted some pictures from Thursday (the day after the surgery) morning.  But there were some more from that afternoon.  Owen made his first excursion out of the bed to take a little nap in the sun on Daddy:

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Later that evening we had a nice visit from Owen's Uncle Tom who has been so helpful on this trip:

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Moving on to Friday I got a few pictures of Owen's head with the swelling at its height:

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You can compare this with when he came out of surgery:

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The back of his head feels like a waterbed - it's all squishy and when he moves you can see it sloshing around.   Here is a view of his head with him sitting up, which he was able to do by the afternoon:

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And here's a picture of Owen trying to eat with his hand all bandaged up to keep the IV in place:

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Shortly after this picture we gave him a bath, which is required before you leave the hospital - and we have to carefully shampoo the incision every day for a few weeks.   Once his bath was done they deemed him fit to leave the hospital and we headed back to the hotel.  This was a day ahead of schedule, but since the swelling wasn't nearly as bad as it usually is with this surgery he didn't need the extra day in the hospital.

Which brings us up to today.  Today we had a minor bump in the road.  Owen threw up part of his breakfast, then slept for a few hours.  At lunch he threw up a bit again.  And finally I tried to feed him some Silk (Owen is allergic to milk) in the afternoon and he threw up part of that too.  So I called the doc because it seemed that every time we sat him up to eat he would get nauseous.  Dr. Fearon was awesome and called us right back and set up a CT scan just to be sure that everything was functioning.  We walked the two blocks over to the ER and got him scanned.  Dr. Fearon looked at the scan and then had the neurosurgeon on call (Dr. Sacco) take a look as well.  They both agreed that his ventricles looked smaller - which is expected as things calm down from the surgery - but that there was no sign of overdrainage.  It appears that Owen is still adjusting to the pressure changes in his head, and they are magnified as you sit him up and lay him down.  The doc in the ER gave us a prescription for some stuff that should help with his nausea while he adjusts.  We haven't used it yet though, I tried my old faithful remedy of peppermint tea and that seemed to settle his stomach well enough that he ate dinner without throwing anything up.  We'll save the prescription in case the peppermint doesn't work, but it has never failed me yet.

So, here is a picture of Owen sitting up before dinner tonight:

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He always perks up after you've run him to the ER and gotten all worried :-)  The swelling is way down today and he has really increased his mobility so the pain must be considerably less in his head.  He still doesn't like it as you lay him down, but he was resting his head on us when he was sitting up and resting his head against the stroller without minding it - which he couldn't do yesterday.  So all is well and he is recovering nicely.  I think tonight I will give him a haircut.  They wanted the hair long for the surgery so that the incision wouldn't show as much, but those curls on top are really getting out of hand.  It's time to tame them down just a bit!
 
Just Sleeping

Not much new to report.  Owen is still doing well.  We moved from the PICU out to the regular floor yesterday in the late afternoon.  Unfortunately it was just as he was falling asleep and he woke up as they moved him - so no nap.  He ate a light dinner and fell asleep around 6:00pm and slept until 3:00am.  I fed him at 3:00am and then he went back to sleep around 5:30 am with a bit of Atavan.  He woke up and ate some breakfast around 7:00am but was really out of it.  He went back to sleep after breakfast and we haven't heard from him since.  The Atavan is out of his system by now and it seems to just be a nice healing sleep.  I think his pain levels have lessened to the point where he can achieve a deep sleep finally. 

His temp has been up and down today, topping out at 102.something and then heading back down a few times with tylenol and Motrin.  They have actually suggested the possibility of letting us out of the hospital tonight - but I think he needs to wake up and show them the alertness that I saw at 3:00am for us to do that.  If we don't leave tonight then it will probably be in the morning.  We are in Texas until Tuesday either way so it doesn't really matter. 

So, I been knitting and watching TV this morning and Daddy has headed down to get us some lunch.  There is still a good bit of swelling in the back of his head, but it will take weeks for that to disappear.  Usually they swell so badly that their eyes close and such, but that didn't happen with Owen.  We saw another kid here that had their head done just a couple of days before Owen and their eyes looked like golf balls and the skin was stretched tight with the swelling.  We expected the same for Owen, but thankfully it doesn't appear that it is going to happen. 

We are in the "exciting" phase of the recovery where you just sit back and watch....

 
CT Scan Comparison
Owen continues to become more and more alert and his pain seems to be lessening as the day goes on so all is well.

I just finished what I thought was an interesting little project.  I took the images from the CT scan that they did a few hours ago and put them side by side with the images taken before his surgery and lined them up as close as I could with them being from two different scanners.  The change is rather remarkable...

You can see these images by clicking here. Enjoy!
 
A Quiet Night

Last night was a pretty quiet one.  Owen slept on and off all night long.  He started to run a fever in the late evening so we've been giving him some Motrin to stay on top of that.  A temperature is expected within the first few days after any surgery that requires general anesthesia and isn't an issue. 

Owen is definitely sore, but he's needing less and less morphine now.  He went from 1:00am to 10:00am without any morphine, but they gave him some at 10:00 because they were taking him down for a CT scan and moving still causes him quite a bit of pain.  The scan went fine.  Dr. Fearon (the plastic surgeon) said that it looked good and cleared him to go to the regular floor.  Dr. Swift (neurosurgeon) just called and said that he agreed that the CT looked awesome. 

Owens numbers all look good.  He's keeping his hemoglobin up on his own so it doesn't look like he'll need another transfusion.  They took his cather out this morning and he's very happy about that.  They took out his arterial line (an IV that is hooked into an artery rather than into a vein.  It is used to continuously monitor blood pressure.) in anticipation of being released from the PICU.  Owen ate a good breakfast and has kept it down.  Last night he had some juice and then thought better of it and returned it back from whence it came.  He seems to be over that now.  At the moment he is resting comfortably.

Right now he only wants to lay on one side.  They have told us that we will have to start being meanies and forcing him to turn over so that his head doesn't end up oddly shaped.

We have had a number of people ask "where are the bandages?".  They don't use bandages here.  They believe that covering up wounds just traps bacteria and promotes infection.  Since they have an incredibly low infection rate here I am inclined to accept their word on that.  They just come along every few hours with some peroxide and Bacitracin to put on the stitches.  They also don't cut any hair when they do the surgery, so he isn't missing a big strip down the middle.  

I'll close with a couple of pictures that I took this morning.  The swelling is starting to increase (as is expected) so his head is looking a bit bigger and his left eye isn't opening quite as much as the left.  He's still looking great for what he has been through and the nurse tells us that he has less swelling than a lot of kids do at this point. 

Here is Owen signing for breakfast, or trying to with his bandages:

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And some current views of his head:

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But in the end,  he's still the same affectionate little boy:

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Pictures

We have been into see Owen and he looks great.  He's obviously a bit uncomfortable but they are managing his meds well.  He has signed for food and is sucking on his finger in a very typically Owen fashion. The amazing thing though is his mobility.  Even drugged and uncomfortable he obviously already has better mobility.  I joked a few weeks ago that when he woke up he'd probably try to sit up and end up vaulting out of the bed because he was used to lifting such a heavy head.  I was joking but it turns out to not be too far from the truth.  He's been able to haul himself all over the bed much more easily than he's ever been able to move before.

So now for the pictures.  I wanted to get a few before the swelling set in so that you can get an idea of where we'll end up.  There is a fairly good puddle there in the back of his head already, but the results are still amazing.  Here are two pictures from this morning before the surgery:

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And here is a side by side of Owen in May, and Owen now:

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Yeah, I'd say they managed to take a bit off!  We were amazed because we just weren't sure how much they would be able to take off, and honestly whether or not we'd even be able to tell.  And the back will go down a bit more in the weeks to come as the swelling goes completely down. 

He is sitting up drinking some juice now and he's doing really well all things considered. 

 
The Surgery Went Well
Both Dr. Fearon (plastic surgeon) and Dr. Swift (neurosurgeon) came out and spoke to us.  They said that the surgery went very well.  They were able to take off just about an inch from the top and took out about 150 ml of fluid.  The Chiari didn't seem to present as big of a problem as they feared so they didn't have to take out the extra bone at the base of the head that they were planning to.   They did have to give him a small blood transfusion, but that was to be expected.  Owen is already starting to wake up and move around and we should be able to see him soon. 

Dr. Swift has already called Dr. Grant, Owen's normal neurosurgeon to give him an update as well.  I'm happy that he took that step since Dr. Grant will have to take care of Owen long term. 

So all is well and we can't wait to see him.  The next few days will be a bit rough for Owen.  We are told that it isn't really painful, just uncomfortable.  There will be a great deal of swelling that will peak in about 48 hours and then start to go down.  It is expected that his eyes may swell shut, but that shouldn't last for long.  They are looking more like their normal selves within a week, but start looking much better by 72 hours. 

We'd like to thank everyone for their prayers and kind thoughts through this time, I am certain that they helped.
 
Surgery is done
We haven't talked to the surgeons yet, but I called in and they have closed him up, turned him over (the surgery was done with him on his stomach) and they are washing his hair.  We expect that we'll be able to talk to the surgeons soon.  Thank God.
 
Surgery is going well
I just called in for a checkup.  The nurse said that he's nice and stable and they are "on the home stretch".  He said they are irrigating now and that they expect him to be out and up to the PICU within the hour.  We'll update after we've talked to the surgeons.
 
Surgery Continues
And that title will probably persist for a while as the surgery will last 4 to six hours. They actually made the first incision at 9:23am. I'll probably give it at least another hour before I call in again because there won't be much to report.
 
Surgery is about to start
I just called in. He has all of his lines in, he's in position and he's getting his final hair washing. They expect to start the surgery in five minutes. It's great, you can call into the OR anytime and talk to the nurse. They also have computer monitors throughout the hospital that are updated with what they are currently doing. We should get our next update in 45 minutes.
 
He is in the OR
They have taken him back to the OR. It will take about an hour and a half to prep him. We expect our first update around 9:00am.
 
At the hospital
We have arrived and checked in. They said that they will come in about a half an hour to get him.
 
We Are Back Home!

This seizure was not nearly as severe as the previous one. I'll post more details tomorrow, but we are home now and happy to be so...

 
Here We Go Again
Mr. Owen had another seizure yesterday afternoon. This one wasn't as bad and this time we were prepared at home. He was napping and his aide Tessa noticed that he was shaking. She got Daddy - I was off getting his sister from school - and they waited 5 minutes. He was still seizing after the 5 minutes so they gave him Diastat. Two minutes later the seizure stopped. His O2 dropped a bit too so they gave him some of that but he mostly kept it up on his own. By the time he got halfway to the hospital he was waking up though. He's mostly back to normal but we're waiting to talk to the neurologist before we go home. 2 seizures in 2 weeks after no history of them is worth checking out.
 
We Are Home!

We are all back together under one roof tonight.  Owen is asleep - he's still napping a lot. He was thrilled to come home though.  He started to look happy as we left the room at the hospital. As soon as we put him in his car seat he started to sign "All Done" over and over again.  When we started up the hill that leads to our house he began his "happy dance" that he does when he's in a really good mood. 

We have come home better equipped than in the past.  We have a pulse-ox so that we can tell if his numbers are dropping during an episode, rather than relying on "Have his lips turned blue yet?".  We have oxygen so that we can help him breathe until the EMT's arrive.  We also have Diastat to give him if he should have another seizure.  We have a very dedicated and wonderful volunteer rescue squad here in our little town, but they cover a big territory and there is only so fast they can get here - especially if they get a number of calls all at once like they did on Sunday night when we called.  These items will buy us time so that he won't be in such bad shape by the time they get here.  If we can just help his little body out a bit when things get started, it will put a lot less stress on his system and things might not get so serious. 

Thank you all for your well wishes, we'll let you know how he is recovering over the next few days.  But for now, we're just happy to be home.

 
We're Going Home!
They have given us the green light to go home. He's not 100% but he's ever so much better. He's smiling at people and playing with his toys. He had a good breakfast. He's still a bit weak and shaky but they said he has a few more days of that. As soon as all the paperwork is in order we're outta here. Yippee!
 
Doing Better
Owen didn't quite wake up enough to go home today but as each hour goes by he improves greatly. When he first woke up at 4:00 am he tried to put his finger in his mouth and kept missing and getting it behind an ear or up his nose. By this evening he could hold his head up with only a little support and could reach for his drink an actually get it in his mouth. He was also saying mama again by this evening. The neurologist says that it could take a few days to come completely back to normal. If all the blood cultures come back negative in the morning and his mental state continues to improve then we should go home tomorrow. Now Owen is asleep so Mommy is going to go do the same. Thank you for all the prayers, they are obviously working!
 
Owen is Awake!
Well more or less awake - awake but quite drunk would be the best description. He has signed for food and drank some juice and silk. He has played with some toys and even gave us a wobbly smile. His coordination is still off and he's very sleepy, but we are miles ahead of where we were yesterday. And I know he's OK because he snuggled up to me and reached up and stroked my face. That is always my sign after surgery or an incident that tells me Owen is back. He should be getting his EEG soon. If he continues to progress they will let him go home tonight or tomorrow morning
 
Oh, He's Found His Finger
Owen has moved the most that he has since last night. He rolled back and forth around the crib for about 15 or 20 minutes until he finally managed to get himself into his favorite position - flat out on his belly with his left index finger in his mouth. A decidedly Owen way to be! He hasn't opened his eyes up yet, but we're definitely seeing some Owen personality coming out.
 
Previous post continued
Please read previous post first. Dr. Wilson also said that some kids can have seizures in response to certain viruses. The same chemical reaction that triggers the body to fight a virus can also trigger a seizure. He thinks this may have happened with Owen. O is stirring!! I need to go!
 
Visit from the neurologist
I have tried to post this a few times and failed. The bigger posts don't seem to work so I will post it in two smaller posts. We received a bit of comforting news. Owen's neurologist stopped by and he said that he is not at all surprised that O is still asleep given the amount of meds he got last night and the strength of the seizures. He poked and prodded him a bit and said that he just appears to be in a deep sleep. He has ordered an EEG for tomorrow just in case there is still any more abnormal activity, but he doesn't think he is still seizing. To be continued...
 
Breathing Tube is Out
They took out Owen's breathing tube a little over an hour ago and he is breathing fine on his own. His sister was here a few minutes ago for a visit, she is staying with my brother for the night. Owen hasn't really woken up yet. He has stirred a bit but hasn't really opened his eyes. They did another CT scan eariler and that looked fine. His temp has stayed down with the Tylenol/Motrin mix. I got to sit and hold him for about a half an hour after they took out the tube so that was nice.
 
On An Upward Swing
Owen is still on the ventilator but they have turned it way down and he is picking up the slack on his own. They are hoping to extubate him in a few hours. He still hasn't woken up yet. Five doses of Adavan and one of phenobarbitol last night really knocked him out. Hopefully he wakes up soon so that we can tell if he's OK. His temp is staying down with Tylenol and Motrin. I'm posting from my phone so it doesn't send out emails about the updates for some reason, but I will update when he wakes up.
 
Owie is still stable
Not much new to report,  but I've gotten word from Michelle that Owie is still stable and still at the PICU.   We'll post more details as soon as we know more.

- Uncle Richard
 
Owen's Bad Night
Mr. Owen missed the PICU so much that he has decided to make a return visit. I'll post details later, but essentially he threw up repeatedly after we put him in bed last night. He couldn't catch his breath and we called 911. He had two seizures at the hospital which was no fun. He's on a ventilator now and is still knocked out from the seizure meds. He's running a fairly high temp and they think it might be a virus. So we are at the PICU at Roanoke Memorial Hospital and he is stable. I'll post more as we learn more.
 
Almost normal

Owen is feeling much more like himself today.  He doesn't have quite the stamina that he did, but it's not far off. 

Yesterday he ran a temp of about 100.4 for several hours, even with the Tylenol.  Then it seemed to go away.  He's still running a bit warmer than normal, around 99.7 for most of the day - so we are keeping a close eye on it.  Of course we are always paranoid for about a month after any shunt placement anyway.  One shunt infection should be enough for a lifetime, let's not ever have another.

Today though he is back to lots of laughs and smiles.  He had whined for the last week and a half straight. Now he is back to playing and getting into trouble.  It has been really good to see.

I have also noticed that his eyes have stopped wobbling.  Wobbling eyes (nystagmus) are a sign of pressure, or brain damage, and Owen's eyes have always wobbled - the iris rotated slightly back and forth. I assumed it was brain damage because they have never done anything else. It wasn't severe, but it was always there.  On the way home from the hospital Owen was gazing up at me as I changed his diaper and I realized that his eyes were looking straight on, with no wobble. This wobble never seemed to bother him, but I have to wonder if he will have better coordination now that the wobble is gone.  I can hope that this will help with some of his grasping and such.

So Owen is a happy baby.  I won't really breathe a sigh of relief until we cross the one month mark without an infection.  Then I'll feel much better about life.  But for today, it's nice to see him laughing and smiling.

 
We're going home!
We have just gotten our discharge orders.  We are going to feed Owen his lunch and head out.  He is feeling much better today.  We took him for a little trip down to the fish tank and to the playroom after they took out his IV.

fishtank-hospital.jpg

He loved watching the fish! And you can see his sister looking at the bubbles too. 

Thanks for all the well wishes and we'll be home soon!

 
Feeling better

Well, the milk of magnesia this morning didn't do anything so they upped the stakes.  Let's just say that the more aggressive methods worked.  About 10 diapers later Owen was feeling much better.  He drank a full thing of Silk and he even let us leave his cochlear implant on for a little while and started to babble again.  He has been playing and laughing.  I'm so pleased to see my happy Owen back.  I hated to see him in pain and it's like a ray of sunshine to see him smiling!!  Let's hope he keeps it up so we can go home soon.

 
Still in the hospital

Hi All!

I have computer access finally. Daddy brought down the computer so that I am now connected to the world again! A big thanks goes out to my brother for blogging while I was disconnected!

When last I blogged on Sunday I had explained that Owen hadn't been acting right so I had made an appointment for a CT on Monday because he hadn't been acting right and we had had a detour to the ER on Friday because he had thrown up in the car. The ER radiologists had said that they thought the CT scan was unchanged from the last one so we were just headed down for confirmation on Monday from his regular neurosurgeon.

As it turns out, it was not to be just a quick visit. When his neurosurgeon, Dr. Grant, looked at the CT scan he felt that the ventricles had definitely begun to enlarge. They hadn't gone really far yet, but they were definitely headed in the wrong direction and it was time to do something about the shunt. Either the shunt was failing, or the pressure setting of 70 mm H20 was too high now that the big fontanelle (soft spot) in front had closed up in the last few months.

While the fontanelle is open it acts as a pressure relief valve. The fluid can press up into this space without pushing on the brain and it causes no problems. However, once it is closed this relief valve doesn't exist anymore and so a pressure setting that had been fine for two years may suddenly be too high. This is one of the biggest arguments for programmable shunts in infants, because it is not unusual for them to need a different pressure setting as their head fuses together. We had taken out Owen's programmable shunt to replace it with a fixed one so that the magnets from his cochlear implant would not be able to interfere with his shunt. So, a pressure change requires surgery.

By this point Owen was almost inconsolable. He was definitely in pain. Dr. Grant had us admitted to the hospital on Monday afternoon. If I hadn't fed Owen lunch he could have had surgery on Monday, but unfortunately he had just eaten before we saw Dr. Grant so we had to wait until Tuesday. Tuesday was Dr. Fuchs' (the other pediatric neurosurgeon here at Duke) day for surgery, so we got a slot with him. Dr. Grant offered to do the surgery after his clinic hours, but that would have meant doing the surgery after two kids with shunt infections had been operated on, and that increases the risk of Owen getting an infection. We've been down that road before and had no desire to do it again.

So on Tuesday Dr. Fuchs went in to see what was happening. If he went in and saw that the pressure was at 70 - which is what it should be - then he would know that the shunt was functioning and 70 was too high. If he went in and the pressure was above 70 then he would know that the shunt was failing and 70 might still be OK.

As it turns out, the pressure was right at 70. The catethers were both flowing, so the shunt system had not failed. This meant that 70 was just too high now that his head was becoming solid. So Dr. Fuch's put in a new shunt whose pressure is 40 mm H2O. He also replaced the catheter that goes into his brain because he thought that maybe it didn't flow quite as freely as the one going down into his tummy.

That was all yesterday. By the time Owen was back to his room he was in a great mood. He was the happiest he had been in ages. Unfortunately it didn't last. After two hours of eating a great dinner and playing in a high chair, he had a meltdown. It took an hour and a half and a lot of oxycodone to get him to calm down. But we figured he had had a long day and it that was it.

He slept through the night just fine - keeping the oxycodone flowing to make sure he got a good night's sleep.

At 6:30 this morning he woke up and was not happy. I figured he was just cranky because he was hungry. Owen believes that food should magically appear - fully prepared and ready to eat - the moment that his eyes open in the morning. So it is not unusual for him to be cranky. Dr. Fuchs came by while I was feeding him and we just agreed to wait until after he ate to see what his mood was. Unfortunately his mood did not improve. He was kicking and angry and upset for most of the morning. He ate two granola bars but I couldn't get him to drink anything. His throat is pretty sore from the breathing tube, so that might be why he doesn't want to drink. He is still getting IV fluids so he isn't thirsty and may not be motivated enough to drink while his throat is sore.

By the time Dr. Grant came in to check on him he was in a pretty good fit. Even with the oxycodone he was still kicking and thrashing around. So they canceled our departure for today to see if they couldn't figure out why he is so upset. Dr. Grant recommenced his Milk of Magnesia because it has been three days without a poo again, just in case that is what is causing him pain. He was pretty upset until lunchtime. At that point a friend that I had met through this website was at Duke to get a second cord blood infusion for her son came to visit. They live in Idaho so I haven't seen them in almost a year and a half, when they came for the first infusion. She and her son Jameson came in for a visit. Jameson is 18 months old and was just the distraction that Owen needed. While they were here we were able to put Owen in his high chair and he and Jameson sat and ate Cheerios and Jello. Owen was actually in a good mood for most of the time that they were here. He did start to melt down just before they left, but at least he spent a good hour up and happy. Then he went to sleep and took a good nap. He is just waking up and hopefully he will be in a good mood.

So that's where we are now. Hopefully his mood will improve and it's just that he was sore today. We'll keep you posted!

 
Owen and family are back to their room
Owen is recovering well.  The family is with him back in their hospital room.  We're not sure exactly when Owen will be discharged, but it will probably be over the next few days.

Thank you for all of your support and prayers!

-Uncle Richard
 
Owie is done with Surgery!
He has a shiny new shunt at a lower setting.  His old one didn't fail.  The pressure setting was too high without the fontanelle closed.  All is well and they should be able to see him soon!

- Uncle Richard
 
Actual surgery just started
Another text message from Michelle just came in:

They just called out, they have just started the actual surgery.  It will be about an hour from now.  I forgot about the incredible amount of prep time they have.


 
Owen went in at 12:35 EST
He should be out in about an hour.    Keep your fingers, toes and anything else you can think of crossed!

-Owen's Uncle
 
Owen is scheduled for Surgery between 11 and 12 EST
This is Owie's uncle Richard. My sister is with Owen in the hospital and can't get to a computer to post this, she asked me to update everyone with a quick post.

Owen is currently medicated so he's pretty happy at the moment.  Here's a picture that Michelle sent from her cell phone this morning:

Owie waiting

He is scheduled for surgery between 11 and 12.   Keep your fingers crossed!
 
A little bit of drama

Every now and then Owen likes to remind us of how much we should enjoy and appreciate the smooth days when there is nothing wrong.  Owen had been really cranky for about a week.  By Wednesday and Thursday he wouldn't really let you put him in his walker or high chair, he just wanted to be held.  I had also noticed a raised spot on his skull - as though the bone had been pushed up - during his bath a few days before.  So I had sent an email to Dr. Grant, our neurosurgeon, and we both thought that it might be worth coming down on Monday (that will be the 12th) for a quick CT to make sure that all was well.

It seemed that his shunt was working, his posterior fontanelle (the one in the back) is still open and there would be a puddle when he laid down which would disappear when he sat up - which is as it should be.  We also knew that he had been quite constipated again for most of the week.  We thought that we had cleared that out, but  his mood hadn't improved.

So on Friday I put Owen and Sammy in the car to head down to Greensboro (just over 2 hours away) for speech therapy.  We made it about a half an hour out when Owen threw up all over and then went right to sleep - and didn't wake up when I opened up the door and let the cold air in to check on him.  He seemed to be breathing OK, so thankfully I don't think he aspirated!  With all of the other signs the past week though I felt that I had reached my limit of what could wait to be checked out.  As it happened I was only about 10 minutes away from the hospital with the PICU so I detoured into the ER there and called Daddy to come meet us.  I was not chancing another aspiration by trying to take him all the way to Duke.  They could airlift us if he needed surgery.

When we took Owen out of the car and put him in the stroller he finally woke up and seemed fairly alert.  They took us in right away and we had a CT within 20 minutes.  They have just rebuilt the whole pediatrics area and it is now a really nice facility.  No more waiting in curtained corrals like at the old ER, now you have private rooms to wait in.  They had a copy of his last CT scan (these are important little details to remember, have a copy with you in the car of the last MRI or CT, and also make sure your local hospital has a copy if your primary care is hours away like ours is) and when they compared it everything looked the same.  They also did a shunt series and found that the shunt system seemed intact.  The ER pediatrician was just awesome, we really liked her. She called Dr. Grant and he said that if everything looked OK to send us home, but that we should keep our appointment in his clinic on Monday.  By this time Owen was more or less his happy little self so we packed up and headed home.

We still felt that something wasn't quite right, but at least we were narrowing down the possibilities.  We thought we had cleaned out the intestines earlier in the week, but it was becoming clear that perhaps this wasn't the case.  By Friday it had once again been several days since the last poo and he was doing a lot of arching his back, having reflux and wanting to lay out flat.  So it was time to break out the Milk of Magnesia to make sure that there wasn't anything blocking up the works.  You see, if there is enough backed up into the intestine it not only makes the kid miserable and can cause damage on its own, but it can also put pressure on the end of the shunt catheter that is in his belly and cause it to stop up intermittently. 

The last time he got really blocked up the GI doctor told us to give him 2 tablespoons of milk of magnesia spread out over the day and to keep this up for about a week, slowly weaning him down to just a teaspoon a day.  So out came the big blue bottle and down the hatch it went.  He loves the cherry flavor, go figure because I can't stand the stuff.  It was dinnertime by the time we started giving it to him, so he didn't produce anything that evening.

On Saturday I started giving him doses bright and early.  By three o'clock in the afternoon I had given him 4 teaspoons (1 tablespoon plus 1 teaspoon) when the dam finally broke.  We changed diapers from then until about 8:00 pm with only a few small breaks.  When he finally slowed down at about 7:30 pm I put him in his walker and he didn't fight me at all.  He loves his walker, it means freedom, but he had been cramping so badly that he wouldn't sit in it for the previous two days.

So hopefully that's it.  We're going to keep our appointment tomorrow, because if I have a CT scan I will most certainly want Dr. Grant's opinion on it.  The ER pediatrician was awesome and made sure that we left with CD's of the CT and shunt series and also films of both, just in case they couldn't read the CD at Duke.  Hopefully he will see the same as the ER docs did and it will turn out that he was just really backed up.

Have a wonderful Sunday and I'll write more tomorrow evening after our appointment.

 
 
 



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