The Amazing Owen
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Ode to a Seizure

And in with all of the useful information on this site, you get the occasional piece of very amateur poetry...

Ode To A Seizure
by Michelle Higgins

Somewhere in the brain a storm begins to lurk
It starts with a tremor and progresses to a jerk.
Normal patterns are as random as can be
But sudden slow rythms show up on EEG.

Seizures you see, come in all kinds
From tonics to clonics they mess with our minds.
We spend our days trying out new meds,
We sleep off their effects, snug in our beds.

As the storm continues to build and to grow
We find solace in one thing we all know.
That this too shall pass as all storms do
And then we'll wake up to begin life anew.

 
Recovery Update
Once we get home it is always harder to update since we have so many everyday things to distract us, but I wanted to put up a quick update before I went to sleep.  

Owen continues to get better each day.  He still sleeps a lot and the incision site is still tender if you touch it in just the right way, but overall he is doing much better than we had expected at this point.  He isn't eating at his usual level either, but then again he hadn't been eating and drinking all that well before the surgery - we are beginning to suspect the Depakote on that.  

The good news is that even though there is still discomfort and a lack of stamina, he has actually been in a good mood.  We had been through a few months of severe crankiness before the surgery and for the most part he seems to be happier now.  And if he's happier now I can't wait to see what he'll be like when he has completely healed.  We have also noticed that he isn't choking and spluttering his way through his drinks now like he did before the surgery so that is another hopeful sign.  It will be a while before we can really tell anything about the walking though.  He has pulled himself up to stand twice, but it really wipes him out and unless he does it himself we haven't been pushing it.  

So, if you are going to need to recouperate, it's nice to do it when it's 80 degrees out and bright and sunshiny!  I brought out the blanket and we hung out in the sun yesterday.  In between naps Owen was feeling a bit more lively and you can see below that he was in a good mood. 



Today we took off the bandages and gave him his first shower - no laying down in the tub in the water for 6 weeks, but we can use the hand sprayer for a shower now.  I had given him sponge baths to clean him up when we got home, but today we started washing the gunk away and that has to feel better.  It's going to take some time to get rid of all the glue and stuff, but at least maybe it itches less now.  

So, all in all things are going well and we just need time for everything to heal.

 
Saturday
Well, there had originally been some talk about sending us home today, but Owen was still not putting out quite enough in diapers and he was running just a slight fever and he woke up this morning rather upset from pain.  So it was decided that he needed one more day to be sure that he was ready.

Yesterday we had the fun of a few visitors.  Dana Cotten and her wonderful son Blake came to visit.  I'm really sorry that we didn't take any pictures, but Owen was not in a good mood at all.  Still though, we were getting stir crazy and sit was good to have a distraction.  Later that evening my brother and his family came over.  They brought us dinner from our favorite local restaurant - Spartacus.  It was soooo yummy! And we did attempt a picture, but Owen was only sort of cooperating

.

It was great to see them again, and we really enjoyed dinner. 

Owen has perked up considerably this afternoon.  I think that it really helped that PT came by and got him out of the room for a bit to stretch out.  He also got his first try at walking.  One of the big things that we were hoping to get out of the surgery was some improvement in his balance so we were anxious to try it.  We know that it will take time to help even if it does help out a lot in the long run, so we are trying not to read too much into today's experience.  But we both felt that he *might* have had some better balance today than he has in the past.  I took a little video so that we'd have something to compare to later.



So hopefully things will progress and we'll get to go home tomorrow.  He has done much better since getting him somewhere where he could walk and stretch his legs.
 
Happy Friday
Yesterday they moved us out to the floor and he had a good night.  Today the pain seems to be peaking, but we are starting to ask more of him.  He was supposed to get PT yesterday and to sit up, but they never got around to it.  So this morning we sat him up ourselves and let him eat some breakfast.  He did well, but only lasted about 15 minutes.  They are encouraging us to take him for walks around the floor today and PT will be coming to see him.  They have come in with hefty pain meds and we hope they will take effect before they try to move again.  

When we had him on Daddy's shoulder to move him from the PICU yesterday I snapped a picture of his bandages:



And here is one of him eating this morning:


So things are going along as well as expected.  Hopefully the worst of the pain passes after today and we start the upswing tomorrow, but we are getting the occasional smile and we are headed in the right direction.


 
Good Morning from the PICU!
Owen did well through the night.  He has had a fair bit of pain, but they are being generous with the pain meds.  This morning they have taken out his arterial line and his catether.  There has been a bit of a question about his hemoglobin which apparently is borderline for a transfusion, but since his oxygen and blood pressure are fine they are just going to wait and see on that for a while.  There hasn't been any drainage from the site which is good.  His dura was so thin that they had to use a pretty big patch in order to get out to stuff that was thick enough to attach to so we're watching for leakage.  Dr. Grant says that he stitches it up under a microscope so it shouldn't leak.

He is on Vancomycin as a preventative antibiotic and toradal and oxycodone for pain - along with morphine if needed, but he seems to be holding his own without it now.  

Here is a blurry picture from last night, you can see that he was still pretty puffy from the fluids, but he playing with his book and not doing too badly:


I have downloaded a nifty photo editing app for the iPad and got a little artsy with the picture that I took this morning.  It's dark in here so it came out grainy, but with it smoothed out and made black and white it's not too bad:

He's just quietly watching cartoons and hanging out in between snoozes this morning.  The plan is to move him out to the regular floor sometime today.  


 
Details While We Wait
The surgery is done, but they tell us that it will be a while before we can see him so I thought a good use of the time would be to post the details of what Dr. Grant found while he was in there.  

He said that Owen's anatomy was really abnormal in the back of his head, more so than you would had thought from his obviously abnormal MRI.  Normally the cerebellum is centered over the spine, and normally the two sides of the cerebellum are about the same size.  Apparently everything back there was skewed and rotated, and one half of his cerebellum was much bigger than the other.  There is a piece that hangs down from each side of the cerebellum and these are called the tonsils.  Apparently the left tonsil was much larger than the right one, and it was seriously squished down into the spinal column. It was also discolored, which is a sign that it was under a fair amount of pressure. He also said that there was so much pressure there that the dura (the membrane that covers the brain) was stretched so thin it was transparent he could see through to the cerebellum. This bodes well for the surgery helping him. If he had gone in there and found that there wasn't any real pressure, which can happen, it would mean that we wouldn't be as hopeful that it would help.

Dr. Grant feels that the surgery was a success and that he was able to open everything up and relieve all the pressure. Owen will spend tonight in the PICU, but he isn't up here yet. Dr. Grant still needed to go back in and help with the finalities, and they hadn't even gotten the breathing tube out. He just wanted to come out and let us know all went well, and now they need to wrap things up before he gets brought upstairs and we get to see him.

We can't thank everyone enough for their prayers and well wishes today, we know they helped with this wonderful outcome!

 
He Is Done!
All went well.  Details to come tonight, but he did well!
 
Surgery Has Begun
They started the actual surgery at 3:50 pm.  It'll take about 3 hours from then.
 
He's Out!
He is unconscious now and they are starting their prep.  They will let us know when they actually start the surgery.  
 
Moving on to Preop
We have moved to pre-op.  Still have to meet with surgeon and anesthesia, but hopefully he'll go back soon.
 
Delay of Game
They just came out and told us that the case before Owen's is taking longer than expected and it will be probably about two hours more.  They said he could have something to drink, but he's out cold right now.  We gave him his full morning dose of Depakote this morning instead of splitting it with is noon dose like we normally do in so that he'd be covered if we got delayed.  This has made him sleepy, but that's fine - sleeping through the wait is the best way to do it!
 
Plan of the Day
So today is it, the big day!  We met with anesthesia yesterday and then with Owen's surgeon.  We went over the surgery with Dr. Grant again.  We found out that he doesn't actually cut any muscle in his nec, they just move the muscle out of the way - which makes us feel better about the recovery.  So,here's the plan:

-Arrive at the hospital around 11:15am
-He'll go back between 12:30-1:00ish if there are no delays. 
-It's gonna take them at least an hour to prep him
-Surgery will take about 3 hours
-Owen will skip the recovery room and will be taken straight to the PICU
-Spend the first night in the PICU and then get moved to the floor
-3 to 4 days on the floor before discharge

And that's the plan.  I'll be updating here and on Facebook today as things progress.  Thank you all for your prayers and well wishes, they are appreciated!
 
More Features, Surgery in One Week

This post is honestly mostly to test that I didn't break anything when I uploaded the new code tonight.  You will note now that at the bottom of most entries there is a list of tags.  If you click on one of those tags it will bring up all of the posts that contain that tag.  So if you want to see everything about Owen's Chiari that he's about to have decompressed, click on the Chiari tag at the end of this post and you will see all of them since we found out about it.  One of these days I will have to take my earliest entries which are not in blog format and change them over so that you will be able to search those as well, but for now you can get most things.  You will also see that there is a list of tags on the right menu under the heading "POSTS ABOUT" and you can click on any of those to take you posts about any of those subjects.

Owen's surgery is one week from tomorrow (or today by the time most of you get up in the morning and read this entry).  Time has really flown by and it's almost here.  I don't have any pictures ready for this post, but I did think it might be helpful to post a link to a very nice description of the surgery that they are going to do on Owen.  If you are interested in learning more about what they will do to fix his situation, click here.

Thank you all for your thoughts and prayers as we head into the home stretch!

 
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