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!
 
Here We Go Again
My pronouncement that the clean out was successful may have been somewhat premature.  Owen certainly improved after the hospital visit, but he never quite got fully better.  He stopped sleeping all day long for a little while, but then he got pneumonia because he had aspirated during the last clean out and of course he slept a lot with that.  And he perked up after we got him the antibiotics.   But then he started having massive pain again.  And the day before yesterday he started sleeping all day again.  So yesterday we brought him into the GI.  His regular one and our backup guy were both out so we saw the nurse practitioner.  Very nice lady.  She declared that he was full of poo after examining him and sent him off for an xray.  Then she called us and said the x-ray confirmed that he was full of poo.  The hospital was full and it was late in the day so she said they would see if they could get us a bed in the morning.  Called this morning, still no beds, come to the ER. 

So to the ER we went.  We waited for about 2 hours and then the doc came down.  We haven't met this GI before, he's the third one in the practice.  I don't like him.  He started out by saying that he didn't think that Owen was backed up at all and that he was just screaming because he didn't want to push.  This isn't out of the realm of possibility, but I asked why it was that both the NP and I both saw lots of poo and why therefore didn't he.  He said that Oh yes, he has lots and lots of poo, but it just isn't severely impacted.  I explained that since Owen has had very little solids to eat that the poo that he is seeing has survived a full 4 liters of go-lytely, double the adult dose daily for two weeks of Miralax, senna, magnesium citrate, you name it and that what little comes out looks like beach sand.  He again said that yes he's full of poo but that it wasn't all that hard.  OK.  Then he did a rectal exam and said that he didn't feel anything there either. Then he said he wanted us to go home and try more laxatives and more stimulants and see how that goes.  I said I wasn't going to try more of that stuff until he was cleaned out because we had already tried all of that.  Then he said that they still don't have any beds for him so they can't really do a clean out for him now anyway.  I told him that I was NOT taking him home screaming like he is in pain.  That I have had to keep him on Ativan for the last few days because otherwise he is frantic in pain and that they really need to fix it.  He reinterated that Owen is not in pain and that the screaming is behavioral.  I flat out told him that he was wrong.  I can easily believe that Owen is afraid to push, but I do think that after 5 years I can at least tell when he's just pitching a fit and when he's in pain. I asked him if the go-lytely given again would be able to clean it out, since they had determined that last time they gave it way too fast and it didn't have a chance to fully do the job.  He mumbled something that the floor that I couldn't understand and I couldn't figure out whether he meant yes or no that it would help.

He then said that they would see what they could do and left the room.  I was thoroughly confused.  How does one person tell me that it's terrible and the next say there is nothing wrong, especially since I can SEE that something is wrong?  I called the nurse, because they generally know better what is happening and told her that I was feeling a bit lost and could someone please explain to me why I was getting two different stories.  I didn't want to be pushing for a clean out if that wasn't going to work and wasn't what was needed, but that I couldn't accept that somehow more laxatives were suddenly going to work.  She said that the doc had just come out and said that the kid really needs a clean out and could they please find him a bed.  I guess the whole thing came down to the idea that they really wanted us to come back on Monday and I really am sick and tired of being told that my kid has to be in pain or has to seize or whatever it is this week because the docs don't have time/room for him.  And yes, he is in pain no matter what this guy says. 

The upshot of all this is that they have found a broom closet or something that they say he can have.  I'm really hoping that we can get my little man happy again soon.  I know that this doc probably now has a dart board up with my picture on it...but Momma Bear just isn't listening to any more excuses.  I know that there are other sick kids here.  I know that they all need help and I certainly don't want to take a bed from someone else, but they need to figure out a way to help all of them and not just expect a 5 year old to endure 3 more days of pain. 
 
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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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:

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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:

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

 
Merry Christmas and Goodbye Keppra
Firstly Owen enjoyed a lovely Christmas with our family up in New York.  For those kind souls that have asked about my father-in-law, we had a wonderful Christmas present in that he was able to come home the week before Christmas.  He has made a tremendous amount of progress since his stroke.  He is able to walk on his own, feed himself and to speak clearly when he concentrates. As such he was able to join us for our Christmas dinner.  For info on Owen's Christmas and to see my father-in-law at dinner you can check out our family blog here.

Secondly there is the Keppra issue.  In past posts I talked about the rage that it seemed to be causing in Owen.  The neurologist had suggested giving Owen vitamin B6 to help with this.  At first it did seem to help.  In the previous two months I couldn't really point to a day where we could say that Owen was in a good mood for more than a few minutes at a time.  After starting the B6 Owen's mood definitely improved.  We would get two or three days in a row where he was in a fabulous mood and back to his old self. 

The problem was that we would then experience a day that was worse than any we had ever had before.  At one point he was so upset that he bit his arm until it was covered in bruises.  Trying to restrain him only bruised him more - Owen is incredibly strong. His face and legs were scratched from his thrashing around. In the end we gave him a dose of Benedryl to knock him out and called the neurologist.  We decided that even though we were having more good days, the bad ones were just getting too dangerous.  The neurologist changed Owen's medication to Trileptal.  Unfortunately you can't just change seizure meds overnight.  We had to wean him off the Keppra first while we slowly brought the Trileptal on board.  But as the levels of Keppra decreased in Owen's system, his good mood noticeably increased.  Owen has been Keppra free for several days now and it has been wonderful.  My happy boy is back.  Today was the first day on the full dose of Trileptal and so far the only side-effect that we have noticed is that he is tired right after he takes it.  His system should adjust to the Trileptal in the next few days and the tiredness should go away.  Owen's tummy has also settled down on the Trileptal - I think the Keppra must have been causing some of the extreme constipation that we were seeing as well.

And finally I will leave you with some videos showing Owen's progress.  Owen now spends almost no time in his walker - it has been parked downstairs for weeks. He wants to move himself and even though the walker can get him much farther much faster, he will fuss in it and want down to crawl on his own.  We have one very determined little man.  He can now crawl up his therapy stairs all on his own.  If he has a wedge or a stair to use to get him started he can sit up on his own.  I think he is extremely close to being able to push up from the floor all by himself. 

So here is Owen taking a few steps with Miss Tessa just holding his hands.  I posted a similar video a few months ago, but it was very short because he only took about two steps and then fell over.  He can now do this all the way across the room and into the next room and so on...

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And here is another video that might not seem all that amazing at first glance, but it almost brought tears to my eyes when Owen started doing it.  For Christmas Santa brought Owen a little wooden noise maker with a frog on it.  It's just two round pieces of wood with a string that holds the two pieces together.  The two pieces close together like a clam shell and make a noise.  I have written before about Owen's lack of tool usage.  He has had a similar toy for years and I've never been able to get him to do more than chew on it or stare at it.  At Christmas though, he figured it out almost immediately:

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So, Owen's Christmas present was a muscial toy, and Mommy's Christmas present was seeing him actually use it!
 
Aw Poo!
Nope, it's not the poo.  Just a quick update...it's not the tummy tract that has been making Owen miserable for the last month and a half.  The GI doc looked at his x-rays today and said that the insides are clean. We've now checked the shunt, cochlear implant and intestines - that only leaves one thing: his seizure meds. 

Recently I found more information about the possible side effects of Keppra.  When you look at the initial list from the drug websites they say "possible mood changes".  When you check the newsgroups however you start to read about something affectionately called "Keppra Rage".  For the last month and a half - since before Owen's surgery, Owen's mood has not been great.  We get a few good hours here and there, but for the most part he has been really cranky.  It progressed from just a bad mood to actually biting his hands, other people's hands, scratching himself and generally showing Hulk-like anger.  We assumed that this was from tummy pain, because that is what has always caused his bad moods in the past. He can't tell us what is wrong, so we have to guess.  And that is also why we've tested every bit of hardware on his body and x-rayed his tummy. 

I started asking other parents and other docs about Keppra and they all agree that in some people it really causes uncontrollable fits of anger.  We have an appointment with the neurologist on Friday to discuss other possibilities for seizure control medications.  I want my happy boy back!
 
Downs and Ups

It has been a couple of weeks since my last update and a lot has happened both awesomely great and not so great. 

As always, we'll get the not so great parts out of the way first so that we can end bragging on all the progress he has made.  After three seizure-free months Owen finally had another one last week.  Owen has only ever had one of the TV-Classic, previously known as Grand Mal and more modernly relabeled tonic-clonic, shake and jerk all over the body seizures.  Instead Owen usually follows a pattern of vomiting, choking and then losing conciousness for a few hours.  In the past, before the Keppra, Diastat and home oxygen, Owen would also lose his ability to regulate his breathing right after he threw up - which would land us in the ER with a breathing tube.  The Keppra is an anti-seizure med that he takes twice a day that is supposed to prevent the seizure from happening.  The Diastat is an emergency anti-seizure med that you give after a seizure starts. 

So, last Tuesday (December 1st for my record keeping) he was coming home from school and Tessa heard him choking in the car seat.  She pulled over and hit him on the back to clear his airway and he started breathing again just fine, but he then lost conciousness.  She was only about a mile from the house so she brought him here and we hooked him up to the pulse-ox. (BIG Kudos to Tessa for quick thinking) His oxygen was fine, but he wouldn't wake up for anything so we gave him the Diastat.  Now the general idea with the Diastat is that you give it to him if a seizure lasts more than 5 minutes, then wait five more minutes and administer it again if he is still seizing.  The problem is that Diastat puts him to sleep, and so does the seizure so I'm not sure how you're supposed to know if you should give him the second dose.  However after the first dose his reflexes were more responsive so we didn't give him the second one. 

He was being monitored on the pulse-ox the whole time and his vitals were perfectly stable so we just called the neurologist's office instead of 911 (per the neurologist's instructions).  He said that it's normal after this type of seizure to sleep 2 to 3 hours and to call him back if he didn't wake up in that amount of time.  After two and a half hours he woke up and started signing for food as if nothing had happened.  The neurologist upped the Keppra dose to 2 ml twice a day from 1 ml twice a day. 

Which brings us to problem #2 - Owen's GI tract.  There have been many discussions of poo on this blog and I suspect there will be many more. As I figure this blog is mostly an educational tool, I tend to describe the situation more than I would in polite company. It's honestly Owen's biggest problem and has held him back more than anything else.  Constipation is very common in kids with hydrocephalus partly because they have limited mobility and so don't stretch out the body and spend as much time upright as other people.  There can also be muscle tone issues inside as well as out.  We have been battling the poo wars since Owen started solid food.  A few weeks ago he was fed some bananas at school - we had never thought to put that on the list of banned foods because he isn't allergic to them (like he is to everything with milk or eggs).  But they do have the effect of stopping up the whole works and that they did.  After several days of enemas and massive doses of Miralax we did finally get things moving again, but only for a day or two.

Since then he hasn't been able to produce anything on his own without the help of an enema.  The worst is that this is an incredibly painful situation for Owen.  He cramps and then just cries and cries...it's really quite painful to watch for Mommy and Daddy.  And when you are in pain you don't want to do therapy or anything at all.  We are somewhat worried that it might be the increased dose of Keppra that may be doing it - since that is a known side effect.  When we were down at Duke yesterday for a CT (that will be covered in the good news section) we also had them do a shunt series - which is a series of x-rays that shows the entire shunt tract, and also incidentally shows the entire GI tract.  I sent those images to Owen's GI doctor today and he should get them tomorrow to tell us what he sees and what we can do. 

OK, so onto the good stuff!

Yesterday we took Owen down to Duke for his follow-up CT scan from the big surgery.  And the good news is that his current shunt is keeping things nice and stable!  There is no need to have a shunt revision!!!  And a few more !!!!!  As a parent, the worst fear is that you will make a decision that will somehow make your child's situation worse than it was and that was certainly a possibility with this surgery.  It is an incredible relief to know that all is well inside his head - and with all of the progress he has been making with his mobility we are completely sure now that we made the right decision.  So we have a lot of !!!!'s about the way that this has all turned out. 

The CT scans look just about the same as the ones that were taken right after the surgery, so there isn't anything new to post there.  The shunt series though did have two interesting x-ray images that I thought were worth sharing.  They show the lines in his skull where they took apart the bone and put it back together. 

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The big circle with the dot in the middle attached to a bunch of electronics is Owen's cochlear implant.  The other wirey thing across the top of his head is the shunt.  You can see how they pieced everything back together. 

And now for the benefit of all this surgery.  Owen's mobility has just increased by so much.  The other day he was sitting on the floor next to me, next to the couch.  He saw a toy that he wanted which was sitting on the couch.   He turned around, pulled himself up and grabbed the toy as easy as could be.  He has done this many times since.  I did get a video of one of his attempts.  This isn't one of his more graceful attempts, but it is the one that I managed to catch:

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Owen's vocalizations have really improved too.  He's saying "na na na na" for no now.  And he is saying "da da da da".  He did not have either of these sounds until after the surgery.  And he is putting them together with all of the sounds he had before to make much more complex "words". 

Owen can now transition from a sit to a crawl without falling over almost every time now.  This is huge because it means we might actually be able to let him sit by himself soon without needing to be right next to him the whole time.  I'm going to try to get a video of that manuever soon.

So, all in all, it's going quite well.  We couldn't be more pleased with his recent progress.  I'll close with a picture of Owen and his sister checking out the train that goes around the Christmas tree:

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Catching Up
It has been a while since my last update - we have been very busy lately.  Therefore we have a few things to catch up on.

Firstly, we got back the results from the biopsies that were done during all of the GI tests that I posted about a few weeks ago. All of the biopsies were normal.  There are no inflammations due to damage, no Hirschsprung's, all of the nerve cells are where they belong and there was no inflammation due to allergies.  So why does he have such bad constipation and reflux?  No clue.

So we took him down to Duke to let them have a go at figuring it out.  We didn't really find out anything new there.  That doctor bascially said that as long as the biopsies are clean, then it doesn't really matter what the cause for the constipation is - the treatment will be the same.  We could go through lots of painful and expensive testing to see if it is because of slow motility or muscles that don't quite fire in the right order or who knows what, but in the end all of those things just require you to give them a lot of laxatives.  So I guess that's what we'll do. 

He also felt that it was probably extreme to consider a Nissen surgery (where they wrap part of the stomach around the esophagus so that nothing can come back up) for the reflux since no damage is being done by the reflux. I am not certain that I buy the idea that it's not a problem to be reliving your meals over and over again all the time, but since we've now had two different doctors tell us that we should not do the surgery yet, I guess we'll take their advice for a while anyway.

I am frustrated that they couldn't come up with something more definitive, but the only thing left to do now would be to drive Owen out to the Cleveland Clinic which is the World's Best GI Clinic.  That would be a very long drive and we would have to really think about whether or not there would be enough benefit to warrant putting Owen through all those tests again.  We're going to give it some time to see how the new regimen that we have recently started with the Miralax works for the constipation.  If we can keep it under control then we will probably leave it at that.  If it continues to be a huge problem then we'll be hanging out in Ohio for a bit (Kristen would be happy about that anyway, that's Cayman's Mommy and she lives in Ohio).

In other better news Owen continues to make lots of progress in his therapy.  Since we have started doing feeding therapy every week we have seen a big difference there.  When we started he couldn't deal with a piece of food that was too big to fit in his mouth - instead of biting a piece off he would just try to cram it all in and then spit out the whole thing.  Now he will bite off a piece and chew it.  We also know that some of his constipation was due to the fact that he wasn't chewing his food well enough.  He is now happily crunching away on his food and we are just working on stamina. 

The "O Ladder" as my Dad calls the creation in my last post is really working well with Owen.  I don't have any pictures because my camera has died and I'm saving up for a new one.  I have an old one that I use to catch a few pictures here and there, but the battery only lasts for about 15 minutes so I have to really plan ahead to use it.  Anyway, the ladder has really given him a way to work up to a standing position and to easily steady himself. 

The other day I brought in a scooter that used to belong to Owen's sister.  It has been in storage for a few years and on a whim I brought it in.  It looks like this:

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I tried to sit Owen on the seat and he didn't seem to want to sit down.  At first I thought it was a balance thing, but then I realized that he was trying to stand up.  He had put his hands on the hand grips and stood right up.  He then proceeded to walk halfway across the room while holding onto the handlebars!!  I was steadying him so that he didn't fall off to the side, but he just took right off!  I certainly didn't expect that!  So next I'm going to rig up one of Sammy's old walk-behind toys for him to hold on to and see what he does.

Owen has also started doing a lot more at school.  He only goes one morning a week, but many times he would just kind of sit and watch the other kids and get cranky if you tried to get him to work with any of the jobs in the classroom (it's a Montessori classroom).  The last few weeks have been much more productive however.  This week he was all over the classroom (I bring his walker) and he worked hard on the wood cylinders that you pull out of a block, on pulling pieces out of a puzzle, at talking to the fish in the fishtank, and he particularly liked the big sponge with all of the soap suds that they can squeeze.  He even made an attempt to play with another child for the first time and while a little girl was scrubbing a shelf he came over and rubbed his hands in the soap bubbles she was making. 

Finally today we went down for speech therapy in Greensboro.  This was probably our best session yet.  Owen has really started to vocalize a lot more.  The only thing that really sounds like a word is still Mom, but he gave a try at quite a few today.  When Emily (the speech therapist) brought out the duck and said "Quack Quack", Owen said "a" "a".  I've been working on saying "Uh oh!" whenever he drops something. He dropped a toy during today's session and he said "uh uh".  He also said "ah" several times with the airplane - each toy has a song that emphasizes a sound and the airplane's sound is "ah".  Owen clearly had a lot of fun at therapy today and participated much more than he has in the past.  He has also graduated to sitting up in the big boy booster seat at the table for speech therapy, rather than sitting with Mommy on the floor.  I think it has helped to have him more at eye level and for him to know that he can't just lay down and stop working. 

So it has been an exciting few weeks.  And now it's time for this Mommy to head to bed.  Good night!
 
Owen, Inside and Out
Before we get to the GI appointment from this morning, I thought I would share a few pictures from last week's joint therapy session with Owen's PT Nacol and his OT Vesna.  They are working together to come up strategies for increasing Owen's arm strength.  They really worked well together.  In fact it went so well that they are planning on doing a joint session every month.  I think it was definitely worthwhile:

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You will also notice the student who is helping.  I am very sorry to say that I cannot remember her name, but she is currently making the rounds with Nacol and she is very nice.

OK, so on to today's GI procedures.  We are still struggling with Owen's reflux and constipation.  Thank you to all for the suggestions that we have been getting.  We did switch him to Miralax and that has been working much better than the Milk of Magnesia that he had been on.  We had hoped that the reflux would improve when the constipation did, but no such luck.  So this morning, in an effort to try and figure out why he is having all of these problems, his local GI ordered an upper endoscopy where they look down from the top to make sure that there is no damage there, a flexible sigmoidoscopy - where they put the scope up the other end to see what is happening down there, and a number of biopsies to test for nerve function, inflammation and allergies.

The procedures went well with no complications.  They put the mask over Owen's face and he grinned up at me as he went under.  30 minutes later the doctor was coming back in.  The doctor redeemed himself a bit from the last appointment (see my post from
two weeks ago) Maybe he was just having a really bad day the last time we went in.  He took the time to show me the pictures that he had taken with the endoscope.  These are the pictures taken from the upper endoscope:

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Yes, those are bubbles in the picture of the fundus.  And here are the pictures from the flexible sigmoidoscopy (aka lower endoscopy):

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The white stuff is just food.  He said that everything looked good, with no obvious problems, or inflammations.  He took a number of biopsies though, because sometimes the cells will show things that the eye cannot see.  However it doesn't seem that there is anything seriously wrong at this point.  We discussed the possibility of surgery for the reflux, but he wants to see about the possibility of it being an as yet undetected allergy causing it first.  I also discussed our upcoming appointment at Duke with him.  I still feel that it is very important for us to have a GI down there, because we have had GI problems the last two times that Owen was hospitalized there and it has been difficult to deal with them because his only GI was up here.  The local guy was actually pleased that we were doing this and offered to help get the results from today's tests down there as quickly as possible.

So, we wait until the results come back next week before we can really know anything.  Then the week after we go down to Duke.  And now, since we had to be at the hospital - 40 minutes away from home - at 5:45 AM, I am going to head to bed.  Good night!
 
A busy week

The last week and a half was crazy, but productive.  Before we have any more appointments and such, I thought I would get us back up to date here.

Tuesday March 24, 2009
On Tuesday we had the "T" party with the physical therapists (PT), occupational therapist (OT) and one of his speech therapists were all here.  The look on Owen's face when he saw them said, "What, all here at once?  You're lucky I can't run or I'd be outta here!".  It was really good to get them all in the same room though.  Everyone was able to talk about what they were working on and strategies to help each other out by including all of the goals in all of the therapies.  For instance you can do speech therapy just about any time.  We have moved to trying to get Owen to vocalize to get what he wants, instead of just focusing on inputting sounds.  That's something that they can all work on.  Arm strength is both an OT and a PT issue so they thought of ways to work together on that.  It was definitely worth it.  Unfortunately I didn't think to take a picture of all of them together, that would have been nice.  We'll have to do it again someday and make sure that we photograph the occassion.

We also let Owen try out a big boy chair.  He did really well in it - it's just one of those molded plastic ones that you get for outside, in a kiddie size:

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Wednesday March 25, 2009
Wednesday was Owen's gastrograffin enema.  This meant getting up and out to the hospital first thing.  This is a very icky test and the nurses and radiology doctor were just awesome about it and were great with Owen.  Without getting into a lot of gruesome detail, they essentially pump a lot of liquid in the back end (that also acts as a stool softener) and then watch everything come back out. The doc said that he did not think that it looked like Hirschsprung's Disease (thank you Emily for pointing this term out to me so that I knew what he was talking about when we got there).  This was good news.  He said that everything looked normal, but even though he'd had three enemas over the four previous days at home, he was still pretty backed up.  This procedure took care of that.  The doc said that maybe he just has a stretchy intestine that is letting things build up. 

Thursday March 26, 2009
Today Owen went to school in the morning and then went to the OT's office for the first time.  Normally she comes out to the house for his therapy, but we can't get as many sessions through Early Intervention as we wanted, so he is going to be seen in the office once a week.  For this session we focused on feeding.  Owen still can't quite do the spoon feeding by himself.  He has the coordination to get the spoon in his mouth just fine, but he forgets to put the food on the spoon.  I think he believes it just magically shows up on the spoon when it gets to his mouth. He also doesn't chew his food as well as he should. Not only do we occasionally find full pieces of fruit in the diaper, but if a piece of food is too big to fit in his mouth he just spits it out, rather than biting a piece off.

Vesna worked her usual magic.  A few minutes in her chair and she had him biting things like a champ.  She has us feeding him long, thin foods that we can put from the side of his mouth onto his back teeth to chew them.  She also has a rubbery thing shaped like a T that he can practice chewing on that he loves.  A few days later we had him actually chewing on pecans and taking a bite from a cookie.  He even did pretty well with the spoon. 

Friday March 27, 2009
Today it was back down to North Carolina for the second time this week, this time for speech therapy.  I think it was at this point that we realized that we had asked too much of Owen in one week.  As soon as we got there he got really cranky.  He didn't want to settle down at all.  After a while of fighting to try and get him to sit, I laid him down to let him rest for a few minutes and he went to sleep, right there on her floor.  Poor guy.  So there were no stellar achievements during that session, and Mommy got to drive two and a half hours back home in a pounding rainstorm.

Monday March 30, 2009
On Sunday we went to dinner at our friends' house and they let us borrow a chair for Owen to eat in because we had forgotten the tray for our portable one (which is really big and not very portable). He did really well in it and it allowed him to sit at the table with us because it is very small.  It also doesn't have a back support that comes all the way up behind his head, so it makes him sit up rather than letting him rest his head like all of the chairs that we use.  We are really trying to teach him not to throw his head back - always believing that there will be something there to catch it.  He did so well in it, and their daughters have outgrown it, so they let us take it home (thanks guys!).  Owen has now eaten three days worth of meals in it.  He has done really well, the only thing is that it really tires him out sitting up like that.  The first two days he was out cold and taking his nap by 11:00 in the morning, which hasn't happened in ages.  But today, the third day, he never napped at all which means that he's building up his stamina quickly.  Here's a picture of Owen in his new seat:

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On Monday I also started calling to try and get the report from last week's gastrograffin enema, but the hospital said they could only give it to the doctor unless I made an hour and a half round trip to get it in person.  They faxed it to the doctor (who should have had it last week) and then the doctor failed to get back to me that day.

Tuesday March 31, 2009
Another call was made and returned by the nurse for the GI. She said the report said that everything looked normal.  We informed her that we had switched him from Milk of Magnesia to Miralax because the MoM doesn't really work and causes too much cramping.  The Miralax actually seems to be working much better, but only time will tell.  She took down a list of his current meds and said good-bye.

Wednesday April 1, 2009
Nurse from the GI's office called today to say that they have set up another round of tests for Owen since the gastrograffin didn't show any reason why he is having so much trouble.  In two weeks he will go in at 5:45 AM (oh, this is what coffee was made for) to be sedated again (poor Owen!) and then they will put an endoscope down his esophagus to check it for damage from his reflux, put an endoscope up the other end to see what they can see about the pooing, and then they are going to take a number of biopsys to confirm or deny Hirschsprung's Disease once and for all.  Hirschsprung's Disease is where the nerve cells in the intestine or colon are not formed correctly in some places thus making it hard for them to push the poo through, or to feel that they need to push.  The images taken during the gastrograffin enema did not show any of the classic signs - such as areas that don't move well - but a biopsy is the only way to tell for absolute sure.

So that is where we are now.  We have an appointment with the GI down at Duke on April 28th.  Part of me said that we should wait on any more procedures until they can see us down there.  But then again having yet one more doctor three hours away from home is not ideal.  Now that they are finally getting a move on up here I am tempted to just stay here.  So I have decided to opt for a middle ground.  We are going to finish this round of testing here.  Then we will take all of our results down to Duke to see if they have any further suggestions or can offer any different treatment.  It would also be good for us to know one of the GI's down at Duke, because that is where Owen goes when he needs to be hospitalized for shunt problems.  Since GI issues are a close second with his brain for severity, it would be good to have a doctor at Duke who knew him.  The last two times Owen has been admitted at Duke we have had GI problems, but have had difficulty in getting them addressed because his GI was up here.  So we should at least meet them so that they know him.

Have a great night!

 
A trip to the GI

OK before I get to the doctor story, I wanted to write about my post on the  on the family blog a few days ago where Owen was saying "Mom".  I had a few people ask why I wasn't more excited about it since we've worked so hard for it.  I guess the reason is that it's so hard to know how much importance to put to it when it's something he only does once in a while.  Given the proper usage (he only does it when I am there) and the fact that it is a combination of sounds that he does not make when he is just babbling we are fairly certain that he knows what it means and is doing it intentionally.  My heart certainly soars whenever I hear it, it's just that I hate to get too excited when I can't be sure that it's real.  The real excitement is that he is making more and more sounds that sound like real speech and less like aimless babbling. 

All right, it's been a while since I've put a good rant on the website, but today it's time.  Prepare yourself...it's a long one and there is a lot of discussion of poo...you have been warned...ready?  Owen has reflux.  Really, really bad reflux that has gotten steadily worse as time has gone on.  He also has really, really bad problems with constipation - if you have been following us for a while you have read about these issues before.  The reflux had been reasonably well controlled after we started the medicine last summer, but it has never gone away and lately it's just a constant thing.  We also suspected that his constipation was so bad that it was actually causing problems with his shunt this past January.  His shunt drains into his belly and the poo was taking up so much room that it was causing an intermittent blockage of the end of the catheter. His shunt also had too high of an opening pressure and needed to be replaced anyway, but the constipation was aggrevating the situation.

The pediatric gastroenterologist - who will henceforth be known as the GI so that I don't have to type all that - has been very responsive when we have called with an issue, but his answer is always the same - give him more medicines, enemas, suppositories, etc.  Sometimes the regimens are quite extreme with enemas every day for days on end and huge quantities of Milk of Magnesia and magnesium citrate.  It always works to clear him out, but then he backs right up again in a few weeks even with maintenance doses of Milk of Magnesia.  They did do an upper GI study last summer where they saw the reflux in action and noted the constipation, but they have never done a lower GI or bowel study to find out why he is constipated. 

Lately we've been in a routine where Owen will do just fine and poo every day for about a week and then he will back up.  At this point he won't be able to sleep and will spend half his time arching his back and writhing in agony for a few days until we can get it cleared.  He is missing therapy sessions because he's just so miserable.  So I called and got him an appointment with the GI, which we had to wait three weeks for.  Grrr....

So today was our appointment.  Owen hadn't pooed yesterday despite getting his maintenance dose of Milk of Magnesia plus an extra one.  He woke up at 4:30 am and couldn't go back to sleep and seemed to be in pain.  He was very cranky and miserable when we got to the doc's office.  The doc listened to my description of Owen's issues and then immediately began to talk about more drugs and more enemas and such. 

The doc thinks that he is just never clearing it all out, even when he does poo.  That it was like a hose with a rock in it where water might be able to get around the rock, but that the rock is still in there.  I said that's a nice analogy, but it doesn't explain how the rock got in there in the first place.  I explained that I felt it was time to be a bit more aggressive about finding out why it was that Owen was so constipated.  He proceeded to show me a picture of the last shunt series that was done in January - which also happens to show the whole abdomen so you can see the distal catheter - and pointed out all of the poo in Owen's intesine and said, "See, he was really backed up." To which I replied, "Yes, we know, they had to give him an enema before they could discharge him from the hospital for the shunt revision because he was howling in pain and they couldn't tell if he was OK to go home or not.  The question is WHY was he so constipated???"

And then he did it.  The absolute worst thing that a doctor can say to this particular Mom.  He said that he hadn't bothered with any further studies because children with Owen's "neurological status" often show these types of problems and he is used to treating them with this regimen.  GRRRRR!  I calmly explained that this particular line of reasoning has been used in the past to tell me that he needed seizure medication (because all kids with hydrocephalus have seizures, right? ), to tell me that he'd be a vegetable and to tell me that he was going to die.  All of which proved to be untrue of course.  So I explained that medicating a child to the point where the medication itself is causing massive cramping and pain without making sure that this particular child is in fact suffering from the general problems that you have seen in others is, as I put it, "unwise". 

They are assuming that he has low muscle tone in his intestine and therefore can't move it through.   He doesn't have low muscle tone anywhere else, why would he have it there?  You need a lower GI study where you watch the muscles in action to verify this.  My bigger fear is that there is something else happening that he is missing because he is making an assumption.  He may be absolutely right, but then again he might be missing something that needs to be taken care of.

And even so, the current medicinal regimen is unacceptable.  We have to give him 1 ml of Erythromycin 15 minutes before he can eat or drink anything.  If we don't then either he refluxes it terribly or he outright throws it up.  We can only give him Erythromycin 4 times a day.  So what do you do when it's latein the day when it's 80 degrees out and he is madly signing for a drink but has already had all the medicine I can give him?  Do I let him dehydrate or do I let him have reflux all night? This little scenario happened just last week and it's not going to get better as we head into summer.  In the end I gave him a small drink and split the difference.

In the end I got the study that I was asking for.  Owen is scheduled for a gastrograffin enema next Wednesday so that they can watch things move through.  The doc was polite, but I definitely got the impression that he felt he was just humoring me.

In my experience with the plethora of doctors that Owen has seen, there are two categories of medical professionals.  The first says, "Look, he has hydrocephalus, he has brain damage, there is only so much you can expect for his life anyway so we'll just do the easiest thing and move on."  The other group is more like, "Yup, he has problems but we are going to make sure that we are doing the absolute best we can under the circumstances."  Group A doctors get booted fairly quickly by Mommy and the GI just moved into Group A today. 

So I called down to Duke to see if we can get him in there for another opinion.  Duke prides itself on Group B type doctors and we owe a lot of Owen's success to them.  They said that the first available appointment is in June, but that we should have his records faxed down now and if it seems like there is something they need to do sooner then they will try to get him in.  I will get the records sent down next week, after his test.  I know I can't get him to Duke sooner than Wednesday so we might as well see if there is anything obvious there before making it clear that we are going elsewhere by requesting the records.

Mommy will not accept that her little boy has to suffer because someone thinks it's not worth the effort to make sure they are doing the best they can for him.

OK, rant over.  Thanks for reading.  I promise to keep the rants to a minimum, but we all have these days.

In better news I will post a few pictures that I took about two weeks ago when we had a beautiful warm spell.  It was perfect weather for getting outside and I got a few pictures of Owen and his sister.  As you can see, Owen's sitting skills are getting better every day.  We used to have to take a quick picture and hope he didn't fall over.  He would also try very hard to lay down as soon as you set him up.  Now he will usually sit for a few minutes before even attempting to get back down.  Have a great night!

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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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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!

 
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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