The Amazing Owen
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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.
 
The Go Bag
Today it was time to do one of those chores that comes up with the beginning of each new season.  Clean the windows?  Nope.  Swap out the clothes in storage?  Getting warmer!  No, it's the restocking of the "Go Bag".  You see we learned early on that hospitals stays can come at any time, and they are usually unplanned.  And when Owen is in the midst of a seizure or shunt infection the last thing I want to be worrying about is "What am I going to need at the hospital if he has to be admitted?"  Or even better yet, "What if he gets airlifted to a hospital three hours away from home again?".  So, we have the "Go Bag" ready at all times so that if there is a problem we don't have to stop and think about these things.

The first item is actually carried in my purse, Daddy's wallet, his Aide's purse and is also tacked on the fridge for good measure.  This is a little piece of paper that contains the highlights of Owen's entire medical history.  There are a hundred questions that will be asked by the ambulance personnel, the ER people, the residents, the doctors and the many other people that will come through the door.  They ask a hundred times partly to be able to train the residents and such, but also to make sure that there aren't discrepancies because you are stressed out.  This is important, but it will also drive you up a tree.  It can also be difficult to remember exact dates and such when you are under stress.  So, instead of answering all these questions, I have a piece of paper to hand them that they can Xerox to their heart's content.  And believe me, the docs, residents, ER people and ambulance people LOVE this piece of paper:

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This just takes all the guesswork out of the whole process.  The really important stuff is highlighted in blue to catch the eye, and I keep the weight up to date so that they can give him seizure meds without fussing about with a scale.  I also always carry a copy of the latest CT scan in my purse.  This can save all kinds of time if the hospital that he is taken to is not the hospital he usually gets his scans at - which is almost always true for us.  We take him to the local hospital to stabilize him in an emergency, but he goes to Duke (3 hours away) for his normal care.

Next, onto the bag itself.  Inside this bag:

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are a change of clothes for Mommy, Daddy, and Owen:

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I have thought in the past, "I can just get by with what I'm wearing for a few days if I really have to" - but that doesn't work if your child throws up all over your clothes (or his, or Daddy's) on the way to the hospital and it's kinda icky anyway. 

Then we have basic necessities for Owen. 

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I am eternally amazed at how long it can take for people to find diapers in a hospital and I find it's best to bring a few so that the hospital staff have a few hours to make some appear.  There are extra batteries for Owen's cochlear implant, a nose bulb because he can't blow his nose and hates it when he's stuffy, some of that cool tape that sticks to itself to keep pulse-ox's on, and some lotion because the low humidity in hospitals really dries his skin out - and it takes a doctor's order to get lotion in the hospital. 

We also bring along some essential foods:

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He doesn't usually eat baby food - but if he has had to be intubated we keep some on hand because it's easy on the throat.  They are just a few flavors of apple cinnamon stuff that has more calories than regular applesauce.  Owen is also allergic to milk and eggs and we can sometimes have trouble getting his soy milk (Silk) at the hospital, or even just food that we can be sure doesn't have milk or eggs in it.  We bring enough to get him through a day or two until we can get the food supply sorted out.

We also bring a bit of nourishment for Mommy and Daddy:

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because it's often 1:00am when things settle down and the cafeteria is closed.  There is almost always a microwave on the floor somewhere that you can use to heat up a couple of meals and the high protein bars are good for snacking on until you can get real food. 

We also bring some of the basics to clean up with:

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because it can really help your outlook on life to be able to brush your teeth and if the above clothing was *compromised* on the way to the hospital by revisiting Owen's lunch, you will really want a shower if things got messy.  Again, it could be the middle of the night by the time things calm down enough to be able to attend to such things and the gift shop will be closed - and you just don't want to pay the $5.00 they want for a toothbrush anyway. There are also a few feminine products because you can't guarantee that emergencies will occur during convenient times of the month.

Finally I have some entertainment for Owen when he wakes up:

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and some for Mommy and Daddy for while he sleeps:

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I have to re-pack every season to make sure the clothes are appropriate (and still fit Owen) and to be sure that the Silk hasn't expired.  The idea is that we want to be able to get through the first few days without needing to leave the hospital if we don't want to and we want to be able to grab it all at a moment's notice.  And with the laundry detergent we have made this bag last us for quite a while in the past once you can start getting food at the hospital.  There are a few more items in there that I haven't shown - spoons and forks for eating and I think there is a deck of cards in there too, but you get the idea.

OK, so that part isn't much fun but I did think it was worth sharing as we've found it really reduces unnecessary stress.  But, I'd rather end on a happy note, so I'll include some great pictures that I took of Owen and Sammy in their Easter finest.  Check out the little guy and his expert standing at the tree:

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I hope everyone had a Happy Easter!
 
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