The Amazing Owen
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CT Scan brings Good News!

Today Owen went for his post-op exam and CT to make sure that the new shunt is behaving itself.  It's always more fun to go to these things when Owen is doing well and is happy.  Dr. Grant was very happy with the way things look in Owen's brain.  The tissue has expanded out nicely and is adjusting well to the lower pressure. 

Below are two copies of CT scans.  The first was done at the local hospital ER in January, and the second was done today at Duke. It's a little hard to compare them because they were done on two different CT scanners in two different orientations and slightly different slices, but you can see that at the top there are now two nice, narrow channels - instead of the wide open space in the first one.  In the lower left you can also see where the tissue has gotten thicker. 

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So it was a good visit and the biggest worry was that Owen couldn't eat just in case he needed sedation for the CT (which he didn't and never has). He was a bit cranky about that, and he has decided that he does not like any doctors and will wail whenever someone in a white coat gets near him.  But it's still worth it to see the much improved scans and well healed incisions.

That's all for tonight, I just wanted to share the good news!

 
Happy Kiddo Again

I have to admit that today's entry is more to test a couple of new features than anything else, but it is a good excuse to put up a couple of pictures and give a quick update on Owen.  The features that I have added are ones that you can't really see. The first was to put in a way to update the blog from my phone.  While we were in the hospital a few weeks ago, I realized that I couldn't update the blog because I didn't have my laptop with me. I rely on the blog to tell the family (and friends) when things are happening during surgery, etc. My brother was kind enough to add updates for me (thanks!) but it would be nice to be able to add quick things from my phone. 

The second feature that was obviously missing during our hospital stay was that of having the blog automatically send out an email to subscribers when I added a post.  My brother could add updates, but I had to call everyone to tell them to look for them because he didn't have the email list.  So if all goes well, an email will automatically be sent out to all of the subscribers when I hit the "Add Post" button. 

So, enough about the technical stuff - the real question everyone wants the answer to is: How is Owen doing?  The answer is that he is doing fabulously!  The new shunt is definitely agreeing with him.  We also called the GI doc to get some advice on cleaning out the intestinal tract because he keeps getting so backed up.  Well, 3 days of enemas and magnesium citrate - followed by several days of 3 tbl of Milk of Magnesia - followed by even more days of 2 tbl of Milk of Magnesia have really improved Owen's outlook on life!  It has also caused Pampers' stock to go up by $1.

So Owen has been nothing but smiles and laughs for the last two weeks.  It has been great, especially after several weeks of him being miserable.  He has now figured out that the walker doesn't only work in the room that he starts out in.  He's a Man About Town lately and gates have been put up at the stairwells.  He cruises from room to room with ease now.  He is also "talking" up a storm lately.  Lots of new sounds and non-stop babbling.  I have some video that I will try to put together in the next few days. 

And, of course, there must be pictures.  Below is Owen in the T-Shirt that I bought him for Earth Day last year.  I just love it!

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That one was taken a few days ago.  Today I caught a few of Owen hanging out in the walker out in the kitchen.  We don't have the blanket attached to the poles for head support anymore, but we have found the poles useful to hang toys on.  The eyes looking down on him are on the hat that went to the spider Halloween costume.  The hat is too small for his big head, but he likes to look at anything with a face and he "talks" to it all the time.  You will also notice that I have added rubber bumpers to the sides of the walker.  The hard oak and the bolts were doing damage to the furniture.  I have also had to replace the wheels.  Owen spends almost all day in the walker now, and he wore out the first set!  I put some more heavy duty models on this time, hoping that they will last a bit longer.

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I love my Slinky!

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My Happy Boy is Back!

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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.

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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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