The Amazing Owen
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Wow, that's rough. Usually those rough patches are blessedly short, but with how LONG you and poor Owen were having to deal with that biting scream pain that he was in, it's a wonder that you didn't literally go insane. I hope you are able to come to a decision that you feel good about with regards to the surgery.....wouldn't it be nice if just SOME things were black and white when it came to our children's medical care?
Comment By Josephine At 12/27/2010 7:35 PM
Thanks for sharing the harder parts too. I think many of us reading sit here identifying with the high's and low's. There is great camaraderie in feeling understood. And when you or others share the tougher parts and the emotions felt behind it helps me learn how to process my own and still find the good. Thanks, my friend! Hugs to Owen and yourself.
Comment By Kristen At 12/27/2010 10:24 PM
((((hugs!)))) Poor Owen! Wouldn't it be great if kids came with lights like your typical Xerox machine, suddenly you get a big green arrow on his tummy with a blinking light saying "Clear Poo!" At least he had a happy Christmas - and you have a week to decide about the surgery. Sounds like Sammy may become a biologist. Hugs to you all! May 2011 be a huge improvement over 2010!
Comment By val At 12/28/2010 2:13 PM
God bless you! Thank you for sharing this incredible story. You might think you're not upbeat, but this story is full of truth, gratitude, humor, and love. I love that you are strong enough to share the good and the bad. And I completely respect that you needed some time to regroup and process. You are a smart woman. You are no doubt educated and have a lot to offer people in your field of study. Please also know that you are blessing so many lives with this incredible website. With your educated mind you have researched information, organized what you had gathered, chronicled it, and made it accessible for us moms of hydro babies and others. Don't underestimate the life changing effect you have had on all of us. God bless you as you sort out the future for yourself, your family, and your blessed Owen. Love, Little Bear's mom
Comment By Kristin At 1/2/2011 12:55 AM

Original Entry:
It's All the Rage
It has been almost a month since I last blogged.  Usually I apologize for long lapses, especially when there has been a lot going on that I should be blogging.  This time I won't.  Believe me, it was better for everyone that I didn't.  I have spent the last month, well two months really, in what author Douglas Adams affectionately called the "Long Dark Teatime of the Soul".  Usually I can stay positive through the pediatrician visits where kids a quarter of his age call Owen a baby because he's in a stroller and they aren't.  I can generally tell myself, "But just look at what he can do!" when I cut up his food and realize that I'll probably still be cutting up his food when I'm sixty.  But for the last two months I have failed at the whole positive mental attitude thing.  The last two months have been, in short, a long hard slog.  Thankfully, things have improved, but I don't think I was ready to blog until they did.

You see, until just a day before Christmas Owen had spent a great deal of time screaming with some unknown problem.  Was it rage from the Keppra?  Did he have a headache?  Was it because he hadn't slept in a week?  Why hasn't he slept more than a few hours at a time for the last week or two?  Was it the shunt?  Was it his belly?  Owen can't talk.  He can't tell us what is wrong.  And can there be anything more frustrating that knowing that something is very wrong but not being able to figure it out? It went from just some whining here and there to outright rage attacks once or twice a day to rage attacks several times a day and night.  And he just couldn't sleep even though we were pumping huge amounts of sedatives in the boy.  My nerves were shot.  The positive mental attitude goes out the window at 2:30am while your kid is biting himself, you and anything he can get ahold of. I did not comment much on blogs or on Facebook. 

So we went through the usual checklist.  We checked the shunt just before Thanksgiving.  We tried every med known to man in attempt to get him to sleep.  And then we noticed that he hadn't put out any poo in a few days so we gave him an enema.  And he put out 2 pounds, 2 ounces of poo (Sammy thought it would be funny to weigh it).  This was about two and a half weeks ago.  The next day we gave him another enema just to be sure and got another pound.  We gave him another day or so and still he didn't go on his own.  This started a long string of Miralax and enemas that produced very little.  We hadn't thought much about poo at first because although Owen used to have lots of problems in that area, he had been much better since he had gotten more mobile and things had been running smoothly.  But that was before Keppra, which is constipating, and the pneumonia which kept him lying down most of the day.

Finally it was three days before Christmas Eve and Owen was screaming a large portion of the day and night.  No amount of intervention would bring on the poo.  It was time for the big guns to come in.  I took him down to the hospital for an xray of his belly and they found that he was pretty well filled to the brim.  They sent us home with more laxatives and different stuff to try.  They did nothing except make him even more uncomfortable.  It's now two days before Christmas Eve and we head for the ER.  He was admitted overnight for a cleanout. 

They placed an NG tube and pumped three liters (yes, that's three LITERS) of a nifty liquid called GoLytely.  It is pronouced GoLightly, proving that manufacturers have a sense of humor.  Oh, and I must say that the poo jokes shared on Facebook by my friends definitely improved the tone of our experience!  Things went well for a few hours.  My brother stopped by with some necessities (when the doc set up the whole thing his nurse failed to tell us that rather than the 1 hour massive cleanout we had done previously, they would be doing it more slowly and we would be admitted for at least a day).  Just as my brother went to leave Owen started seriously raging.  Versed, Valium, nothing had an effect.  My brother gets the gold star for staying there with me to hold him down so that he couldn't pull out the NG tube.  And my Mom and Dad get the gold stars for cooking dinner and throwing the family Christmas party that night while I sat in the hospital awaiting poo. 

At about 5:30 the next morning I woke up to the sound of Owen filling his crib in one horrifying whoosh.  After levitating him above the bed to change out the sheets I got him cleaned up.  It was a lot but I figured that there was more to come.  I had no idea.  At 8:00am the doctor came in.  I hadn't met this GI doc before, but I do like him.  He was covering for our normal guy over the Christmas holidays.  He came in and said he needed to do a little checkup to see how Owen was doing.  If you are squeamish you probably should skip to the next paragraph, but it's just too funny not to share.  So the doc puts his finger up Owen's bung, and then a few fingers, and then suddenly he reaches in and says "This will make him feel better".  Apparently there is a button that you can push somewhere about wrist deep in a kid's abdomen that will release the world's largest fountain of poo.  It hit the crib walls, the floor, and formed a complete lake around Owen.  It was the single most impressive thing I've ever seen.  And he was right about how it would make Owen feel.  I sadly didn't get a video of the fountain, but after cleaning him up, this was Owen's expression:

OwenSmiling.jpg


A few hours later we headed home.  He was much better that night.  He was still somewhat cranky on Christmas Eve, but it took a while to completely clear all 3 liters of that stuff.  Our Christmas miracle was that Owen was in an absolutely great mood all day.  No rages.  I didn't get bitten, scratched or pinched all day.  How cool is that?

Owen has continued to be much happier.  He still doesn't sleep past 4 or 5 in the morning, but he's just up there playing instead of screaming.  I don't know that he could be in school yet because he still wants a nap at about 10:00 in the morning. 

His VNS surgery is scheduled for January 5th.  We are on the fence about it.  Owen has not had a seizure since starting the Keppra.  Without the pain of the belly issues, he is actually in a pretty good mood most of the day - the Clonidine is doing its job at leveling out the mood.  But there are some down sides.  He doesn't seem to want to pull up to stand much anymore.  He can't seem to quite get himself onto the couch - he's lost some strength during the last two months.  And he still has a tendency toward going off the handle if you ask him to do anything he doesn't want to.  And he still can't sleep. And it constipates him. We are going to reassess at the end of this week.  

So, I apologize for not being around the cyberworld much lately and for being a grump to those who have dealt with me in person.  As Owen's mood improves so does mine for the most part.  I still have some issues to work out - I have degrees in physics and computer science and I expected to use them.  Being a babysitter and housekeeper with no creative outlets just doesn't work for me.  I love to teach too, and I enjoyed being with Owen at school - but he hasn't been in school since October.  And teaching a child that if I work with him all year might manage to put the paintbrush onto the paper to make a mark without me holding his hand is not exactly sharing my knowledge with others. Though it is still way better than being in the house everyday.  And yet there is no way that I could have a regular job even if we got an aide to go to school with Owen.  Owen has been in and out of the hospital over and over again during the last few months.  How could I make a coding deadline and commit to deliver anything if I have to keep taking time off without warning to take Owen in to get cleaned out or scanned or whatever?  And that's not even counting therapy and doctor's visits.  My only hope is that he will settle down enough soon that he'll at least be able to go to school, and maybe we'll find a respite worker again that can give us a break now and then.  

 And now I have said my piece.  I thought long and hard about whether or not to share my teatime on this blog.  But I committed early on to sharing the good with the bad and it's not realistic to think that you will go through year after year of dealing with medical issues without occassionally having some rough emotional patches.  While I was in the hospital with Owen once a doctor suggested that I see about getting anti-depressants because I seemed a bit down.  I asked him if it would make Owen's situation suck any less.  I pointed out that clinical depression is when you are depressed even though you are in a situation where you should be happy or at least neutral in normal life.  Being thrilled while you're dealing with a very depressing situation is a sign of dementia in my book.  It wasn't normal for me to be happy about that situation and it is perfectly normal to have times when it just isn't easy to cope with looking at a lifetime of having your life interrupted by medical issues. 

I always try to leave on a positive note and today I will do the same.  We were very thankful to have Owen's biggest issues taken care of by the time Christmas came.  I will close with a picture of a very happy Owen hanging out with his sister and grandparents on our couch:

2010-12-26-0068.JPG

For now I'll just be thankful that he is no longer in pain and that he can smile again!

 
 
 



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