March 31, 2008

Cabana Boy



Today we went started out the morning at the pool. Unfortunately, there are some sort of repairs being done to the sidewalk outside of our condo which is causing a lot of noise and dust. So, to escape the dust we went out for lunch at Kretch's. It was faaaabulous. Really, really good food for really cheap. It was such a local-y type place and not touristy at all. Our family single-handedly lowered the average age in that joint by probably 60-years! Ha ha. Ben was an absolute hit and he had every waitress in the place trying to give him crackers or whatever to eat. One waitress in particular was just going on and on about how good-natured he was and kept asking us if he was always like this and blah blah blah. It was such an if-only-you-knew moment.

We spent the rest of the afternoon at Tigertail Beach tucked under a cabana. It was very, very sandy with all the wind, but really peaceful and beautiful. We've ended the day with some pizza and key lime pie.

March 30, 2008

Afternoon at the beach

We spent this afternoon at the beach. For those of you who know how totally and completely pale Ben's mom is, don't worry...we're sticking indoors from 10a-2p and we've already used 2 tubes of sunscreen.

The trip ended with a sunset that brought about applause. Great day.




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Some R & R

We are on vacation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

And holy cow do we need it! We flew out yesterday. Here's Ben getting serenaded by the blues brothers at the airport.



We are living it up here. Yesterday we went out for a $60 lunch (yes $60!), swam in the pool, went grocery shopping, and crashed. We're staying in a nice, cozy condo that came with a high chair, crib, pool and sand toys...heck, even the outlets were already plugged. It's perfect. Our biggest stress every day is making sure we've got enough sunscreen and figuring out our next meal.

Here are Ben and his dad playing in the pool.



Time to go eat some pasta salad out on the balcony and watch the waves roll in. We're heading off to the beach this afternoon. Woo hooooo!

March 24, 2008

Spinal surgery date set

We set up Ben's spinal surgery date - April 14th. It's a Monday and for now he's scheduled as first case. Let's hope it stays there because, for those of you who don't have the distinction of knowing, being first case makes a HUGE difference. The later you are scheduled in the day the less likely you'll actually have surgery at that scheduled time...and that means possibly several additional hours of waiting around with a hungry, cranky baby. No fun. So, yay for first case!


We'll need to be at the surgery center by 6:30 a.m. The surgery should take about 4-hours and he'll stay in the hospital 3-5 days. For the first couple of days he is supposed to remain on his back so that he doesn't start leaking spinal fluid. Pleasant thought, eh? We're sort of wondering how on earth we're going to keep him on his back. Here's hoping he'll still be groggy from the anesthesia and the pain killers and not want to move around.

It's oddly convenient that on April 17th we have a consultation scheduled with the Neurogenetics department (something we set up a long time ago). We're not entirely clear about what this appointment entails, but at the very least we should be able to finally narrow down whether Ben has VACTERLS or Caudal Regression Syndrome...or whatever else.

So, there it is. We have a date.

March 21, 2008

Surgery is recommended

We finally heard from Dr. Frim. That's right...he called at 8:19p.m. while he was driving home from the hospital. Good grief.

He said Ben has significant fat infiltration in his filum terminale. Also, his conus doesn't move within the spinal column on the various images which indicates the spinal cord is being pulled tight.

He recommended de-tethering surgery.

We'll get a second (or third) opinion just for peace of mind, of course.

The surgery is considered simple and easy by neurosurgeon standards...I think he even used the word "boring." It should take about 4-hours and Ben would be in the hospital 3-5 days.

Okay, so now for the really weird thing. Dr. Frim says he doesn't see any syrinx. He says Ben's central canal is a tad bit wide, but he wouldn't call it a syrinx. Go figure. Well, that was fun to freak out about for a week.

Honestly, though, we're not terribly shaken up by this. I guess we sort of expected it. It's just nice to know. Gosh, who would have thought a year ago that we'd be saying how relieved we are to know our baby needs spinal cord surgery?!

Cuckobanans!!!!!!

More info:

What is tethered cord?

What is fatty filum? (warning: this one has a photo)

What is de-tethering surgery like?

Some more about surgery

March 20, 2008

Radiology report in hand

We have the radiology report from the MRI now and from what we can tell it says two good things:

1) Ben does not have a Chiari's malformation.

2) His spinal cord ends in the right place (which hopefully means it's not being pulled and damaged by the fatty filum).

Very, very good news. So, we've got that to keep us sane for the next day.

March 19, 2008

Have to wait until Friday

Dr. Frim emailed us back and said just what the nurse said...he reads the films on Fridays and will contact us after that. Grrrrrrrr! To his credit, the email was sent at 1:15a.m.

Whatever. I mean, it's just a cyst in our son's spinal cord is all.

I'm just throwing us a pity party this week, I guess. It's easy to do with a week like this.

Ben and I both have some sort of cold and I'm starting to feel asthmatic. I'm still in the pajamas I wore to bed two nights ago. Whatever this bug is it has basically turned on the faucet in Ben's nose. I can tell where he's crawled because he leaves a trail of snot. Yes, seriously! How can so much junk come out of a nose that small anyway?! He's in a great mood despite it. Maybe he's trying to cheer me up.

By the way, his new favorite toy is this "Family Law" book (one of Mike's) that fell off the shelf in the bathroom. He just sits there and turns it around to examine the cover and then he flips through the pages. It's weird. I mean, it's not like it has pictures in it or anything. What's he trying to tell us exactly? Thinking about emancipating yourself from your wackadoo parents, Ben?

In a way it's nice they've found another defect because now we've got a baker's dozen. A baker's dozen of birth defects. Christ on a bike WHAT are you DOING up there, God? One of our VACTERLS friends tells me God is working in an imperfect world. You can sure say that again. A baker's dozen. Sheesh.

Not that I expect to ever really find meaning in all of this, but one of Ben's awesome aunties says she believes all of this is going to lead to Ben doing something really amazing when he grows up. I like that idea a lot.

I think I'm going to go clean out the bathroom drawers to pass the time. Something has to get Friday to come sooner.

March 18, 2008

Gave email a try

We sent a short, to-the-point email to Dr. Frim this morning and kept the emotional garbage out of it. We recognize in the grand scheme of things our request of his time is soooooooo NOT a top priority. For goshsakes this could possibly be "Tumor Tuesday" for Dr. Frim in the OR when he'll spend an entire day operating on brain tumors. For real!

So, we'll understand if he doesn't get back to us until after Friday...but gosh it would be nice if a tumor surgery got canceled (because of a sudden, miraculous recovery of course) and Dr. Frim found he had nothing better to do than check his email, read a little guy's MRI, and let the parents know what the heck is going on.

Oh, and in a lousy attempt to distract us from our anxieties we booked our vacation flights...to Fort Lauderdale, Florida!!!!! The Fradin grandparents were so awesome about giving us their frequent flier miles to buy these tickets. Now we just have to find the perfect place to stay - a place that is beachfront with a pool and kitchenette and not completely overrun with the spring break crowd. A tall order...ideas anyone? (We've been considering driving across the state to Fort Myers.)

March 17, 2008

Grrrrrrrr

So I called Dr. Frim's office to double-check that they knew we had the MRI done last Thursday instead of this Thursday as we were originally told...and guess what...NO. The nurse told me they STILL had him down in the schedule for March 20th at 10:00am. She said that Dr. Frim, therefore, didn't know it had been done so he didn't read the films yet. I told her that the sedation team told me that they emailed Dr. Frim when the MRI was performed. She still said no, he still wouldn't have read the films because he usually reads them with the nurses and it hadn't been done yet.

Now for the rub...

"Dr. Frim only reads films on Fridays."

He's in surgery Monday, Tuesday, Wednesday and in clinic on Thursdays.

FRIDAY?!?!? We have to wait until FRIDAY?!?!

I explained to her how *I* hightailed it down to their hospital last week because of THEIR scheduling/administrative/communication error and now WE have to wait a whole week??? Yes.

I told her how Dr. Sullivan, the orthopedic surgeon, was able to squeeze us into his schedule. I told her how he said he saw a syrinx in Ben's spinal cord, so we were especially anxious to hear back. No.

I told her how frustrated I was. No.

I asked her what I should do in the future to make sure this sort of snafu doesn't happen again. She didn't know.

I hung up and just broke down. So, yes, people I do bawl my eyes out sometimes. I'm not such a rock after all. The cat is out of the bag. I cry when I'm frustrated and I AM SO FRUSTRATED!!!!

I'm frustrated because I've been really impressed by U of C Comer. The facilities are beautiful. The doctors have been really, really great (even the ones I have to argue with...heehee). The nurses have been awesome. I'm mostly frustrated because our futures, Ben's future, are just held in limbo for another week. We need to know now, not because one more week has an impact on Ben's health, but because one more week has an impact on all of us. One more week of agonizing over what could be wrong. One more week wondering if Ben has any of the symptoms of a syrinx...symptoms he can't tell us about like pain, weakness, headaches.

I'm beginning to see why I've heard rumors from several sources about "unhappy patients" at this hospital.

'Cuz lemme tell ya, I AM UNHAPPY RIGHT NOW.

March 16, 2008

Back to reality

We've been "out of town" since Wednesday...we've been staying at a hotel in Lisle, IL for a cousin's wedding and it was a marvelous distraction from all this spinal cord junk. We still haven't heard from the neurosurgeon, but we'll tell you what we know so far. Mind you, what we know comes from the orthopedic surgeon and not the neurosurgeon.

Well, let's start with the good news, right? Orthopedically things look pretty good considering. This latest MRI gave us much more solid information about what's going on with Ben's vertebra. The hemivertebra in his thoracic area is very stable. The vertebra next to it is an abnormal shape, too, but is actually shaped in a way that provides more stability to the spinal column. Sweet! The deal with his lumbar vertebra has been confirmed and it's worse than what the last orthopedic surgeon told us - it's a fusion rather than another hemivertebra. Blah. BUT, we were told that everything looks very stable and he doesn't foresee this causing any developmental issues or need anything sort of intervention (read: bracing or surgery) in the future. Woohoo! For once there was no mention of any not-walking or limping garbage. YES!

And now for the bad news - syringomyelia. The orthopedic surgeon (again, not the neurosurgeon) said he could see a syrinx in Ben's spinal cord. A syrinx is basically a cyst inside the spinal cord and over time it can cause damage. We're not sure what area it's in or how large it is. We don't know if it will need an operation...although that certainly seems likely considering the other factors involved (not-so-perfect urodynamics results and fatty filum).

We're anxious to hear from the neurosurgeon and really won't know much more until then...hopefully Monday or Tuesday when the radiology report should be finalized.

So, it's been nice to be away from home - and away from the internet and the endless researching (and worrying). Instead we got to go to a super-fun wedding, ate some awesome food, and hung out with our wonderful family.

(Yo, Dr. Frim, give us a call wouldya?!)

March 14, 2008

Sadly, there is maybe another problem with his spinal cord. We'll know more in a few days.

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Ben is back to his old self today and doing good.

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March 13, 2008

He's been released from radiology and now we're trying to see the orthopedic surgeon.

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MRI is finally done! He's groggy.

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MRI is finally done! He's groggy.

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It took 3 sticks to get the IV in, but he went to sleep fast.

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Friends

Okay, first of all...how is it that I can spend all morning just wishing he would take his nap already so I can get stuff done and have a little peace, but about 10-minutes after he has fallen asleep I can't wait for him to wake up because I miss him so much and it's so boring!?

It's things like this they NEVER tell you in those what-to-expect books.

Here's a friend of Benji's we met at the Ronald McDonald House in Cincinnati. She came all the way from New Zealand to get care there and stayed for months and months. I'm telling you, this girl practically owned the RMH...she was everywhere at once and friends with everyone. Now that she's back home she's having a hard time with some kids picking on her at school. Just the idea of it breaks my heart and I wish I knew how to help.
I can only hope that time will teach me how to support Benjamin if a similar situation were to arise in his future. I hope, too, that I (and anyone else following Benjamin's journey) can raise my child to care for others, be sensitive to others' feelings, and stick up for someone being treated badly.
(And heaven help you if I'm your teacher and I find out you've been picking on someone!)

March 12, 2008

MRI...TOMORROW!!!!

ACK! What is it with University of Chicago and their last-minute appointments???

I just got a call from the anesthesia people there. They were calling to go over Ben's eating restrictions for the MRI...which they had down for TOMORROW. I swear I've had it written down as the 20th all along.

So, now I'm packing up the place like a madwoman and trying to get me and Ben down to the Ronald McDonald House by 9:00pm. GAH!!!

His MRI is scheduled for 9:00am tomorrow (Thursday) morning and should take about an hour-and-half. Please send prayers, good wishes, vibes, hopes or whatnot headed Ben's way...

...that the sedation goes smoothly.
...that Ben is comfortable.
...that the MRI produces perfect pictures.
...that we learn everything we need to from the MRI.
...that Ben doesn't have to have spinal cord surgery.

Many thanks.

March 07, 2008

Happy Friday!

Ben is doing good. No blood in the diaper since yesterday so that all seems to be in good order. He's enjoying his doctor-ordered "daily tub soakings" a lot. He's just into everything all over the house and having a good time.




We're going to spend the day (it's my birthday!) tooling around some stores and just getting out and about. Happy Friday indeed!
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March 05, 2008

Urodynamics not so dynamic

We got over to the hospital around 8:30a or so and ended up in the operating room at something like 10:30a (we were scheduled for 8:45a...hahaha). So that meant some waiting around. Aunt Barbara joined us for the fun once again. We're going to have to start giving out awards for this stuff, I think. She is seriously my hero.

Ben liked the keyboard that controlled the TV. Here is is demonstrating how you change the channels....



Here he is admiring his channel selection. There seemed to be some show on the History Channel about satan that he kept turning it to. That was pretty disturbing. Heh heh.



The resident came by to have me sign the consent forms and somehow had it in her head that Ben was there to get a cystoscopy and a suprapubic catheter. Yeah. Uhm. So that was...uhmmmm...YIKES. I got her set strait and you better believe I went over that consent form with a fine-tooth comb.

He wasn't the happiest little boy after the cystoscopy and catheter placement.



Then he discovred the glowing pulse-ox thingy taped to his finger that made his finger glow red like a lightbulb...



Hey that's pretty cool!



He had an awful lot of blood in his diaper and seemed pretty uncomfortable whenever he would urinate. They assured me it's normal. I assured them that I was no "catheter virgin" and had seen him get lots of urinary catheters and have never seen this much blood...oh yeah, except for that ONE TIME when he ended up in EMERGEN-FREAKING-CY surgery. I guess it's okay, though, because he seems okay now. (Gonna keep an eye on that.)

Once we were discharged from the surgery center, Aunt Barbara had to leave us...I guess some people have to work or something. Hee hee. Our good friend (and MD/PhD), Tiphanie, joined us for the afternoon full of fun Urodynamics.

The test basically consisted of Ben laying around nekkid with a bunch of monitors attached here and there, while they pumped his bladder full of saline and watched what happened. The part that makes it all so fun is that apparently he needed to be calm and still...and, well...not crying and junk. By this time he was D-O-N-E done with all this hubub and would have nothing of it. He was pitching a first rate fit. He didn't want the pacifier, didn't want the bottle, the fish tank, the flashy toy, the blanket, the fish projected on the ceiling, the light box, or the Finding Nemo movie playing on the TV.

I even hopped into bed with him. Nope.

I finally sighed and said, "Okay, kid. I'm busting out the big gun here. Don't ever say I never did anything for you."

And I breastfed him there on the bed while a nurse, the resident, and the urologist pumped his bladder full of saline for what seemed like an hour. And he fell asleep.

Sigh...a mother's love, right?

So, the results....good & bad. Well, not good...but not bad. Bother.

His bladder capacity is a little too high. His bladder pressure is a little too high. His bladder doesn't empty completely. That's the bad stuff I can remember at the moment.

The good stuff is that his bladder capacity isn't extremely high, his pressure isn't off the charts, and he does empty almost all the way. He doesn't need any sort of bladder surgery or whatever at this time. We'll add a 6-month standing appointment with the urologist to our schedule.

The cause of these problems lies in the spinal column rather than being from a defect in his urinary tract. So, basically, the results of this study are going to be combined with the results from the MRI later this month and will be used by the Neurosurgeon to determine whether spinal cord surgery is needed.

What a day! I could use a dynamic soak in the tub.
Done with urodynamics testing. It wasn't great news but not horrible either.

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He's out of the OR and waking up. We're waiting to go back and see him.

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We just handed him off at the OR doors. He was pretty sleepy...but not too fussy considering he couldn't eat.

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March 04, 2008

Urodynamics...THIS Wednesday!

Yikes! Well, we heard back from Dr. Gundeti. Comer's urologist, and apparently he wants to do the urodynamics evaluation THIS Wednesday. Yikes! Yikes! So, we've been scrambling to make arrangements for that.

Here's the plan....

Tuesday, March 4th
1:00p - Physical Therapy at Lutheran General
Drive to Comer
Stay at the Ronald McDonald House Comer



Wednesday, March 5th
8:45a - Cystoscopy - 45 min - This will be done under general anesthesia in the OR. The urologist wants to see for himself what Ben's urethra looks like. He'll insert a small camera, called a cystoscope, into the urethra and will basically shoot a movie of the insides. Ewww...and cool! He will then place a urinary catheter based on what he sees there. They're doing it this way because of the scar tissue, kink, pockets, or whatever is going on in the area where he had the leaking after the pull-thru surgery. He'll have eating restrictions before this appointment...so that should be fun! Haha.

We'll wait for him to wake up and then just hang out until his afternoon appointment.

3:30p - Urodynamics Evaluation with Dr. Gundeti - 1 hour - We can stay with him during this. They will basically fill his bladder and run a bunch of tests to see how it all empties and stuff. This will hopefully let us know if Ben has any bladder problems...either neurological or as the result of a physical defect. This will play a significant role in telling the neurosurgeon whether he would need a de-tethering surgery or not.

Sooooo....that's a whole lot to figure out all of a sudden. I guess the good part is that we only have a day to get all worked up and worried about the anesthesia. Gosh what's with us!? Of all the things to get anxious about....sheesh.


So, please think of Ben this Wednesday. Thanks!
We'll send updates here, of course.

March 03, 2008

These legs were made for walkin'!

This morning Benjamin suddenly figured out how the walker thingy worked! He's been cruising his way around the room all day!

video

Isn't he just something else? I wonder when we'll stop celebrating these little things. Hopefully never...it's the best feeling in the world. THE BEST!

(Thank you, Casey, for the perfect gift!)

March 02, 2008

Neurosurgeon Nuts Explained

So, here's what happened on that Thursday when we were crazy enough to see two neurosurgeons in one day...

In the morning we met with Dr. Tomita, head of neurosurgery at Children's Memorial. He was very sweet. He reviewed Ben's MRI from July and said he saw a small bit of fat in his filum terminale and that he should have another MRI to make sure it wasn't pulling on his spinal cord. He also examined him pretty thoroughly, checked his reflexes, and compared his legs. Things looked good there. Yay!

Next we were off to see Dr. Frim, head of neurosurgery at University of Chicago's Comer Children's Hospital. When we made the appointment the nurse told us to expect it to take 3 hours (yes THREE) because he's a "very, very busy surgeon." Well, she was right. We got there about 45-minutes early and got to meet up with a good friend who works for U of C now. So great! They led us back into the examining room promptly at our appointment time. This seemed good.

We waited in that room for 2 and a half HOURS before we saw anybody. We were literally falling asleep...well, not Ben. No, he was having a ball pushing his book around on the floor. Gosh, that kid is cute!! Anyway, after 2.5-HOURS the resident came in to take a medical history and do a preliminary exam. He looked over Ben's files and came across the medical history I typed up. It's a three page document, in fact, that describes all of his various defects, surgeries, and exams. I need it just to fill out all the forms at these appointments...there is NO WAY I could remember it all. I mean, it's pretty telling when there aren't enough lines on these forms for all the surgeries and defects your NINE MONTH OLD has!

Well, anyway...

So, the resident comes across this medical history document of mine and he looks it over sort of curiously and then asks, "Did you make this?"


Uhhhh....If only I had come up with the reply one of my VACTERLS friends later proposed, "Oh no, a little fairy made it for me. And when she was done doing that she baked me some cookies and brough me some milk!"

I said, "Yes." (Goshdarnit!)

Eventually Dr. Frim showed up. Ben had pretty much HAD IT with that room. I mean, that boy closely examined every inch of the carpet and tasted nearly every chair (and earnestly tried to taste the waste containers!). He was D-O-N-E, so Aunt Barb - bless her heart - whisked him out into the hallway so I could chat with the doctor in relative peace...you know...without Ben crawling up my leg sayin, "NA! NA! NA! NA! NAAAAAA!"

Basically Dr. Frim echoed what Dr. Tomita had to say - Ben has a tiny bit of fat in his filum and needs another MRI...oh yeah, and a urodynamics evaluation to assess whether he has a neurogenic bladder. Bother. Then - and this is what turned my world upside down - he asks me, "So, they diagnosed him with VATER huh?"


"Yes. That's what the NICU put in his discharge summary."


"Yeah, I don't think he has VATER."


(There was a mini-meltdown going off in my head, lemme tell ya.)

"WHAT do you mean???"

He went off on some tangent about when we stop becoming fish and start becoming humans and blah blah blah and we actually argued about it. Yes, I argued with the head of neurosurgery at University of Chicago about what the VATER acronym stood for....and I WAS RIGHT. We ended it with him saying he was going to "look it up" and me telling him to call me when he does so I can say, "I told you so."


Hee hee. I'm such a stinker!


Oh yeah, and you have to hear about what this guy was wearing. Holy cow. It was shocking. He had on pleated khakis which were funny enough alone, but along with them he was wearing a bow tie. YES! A bow tie. It was hideously hilarious....well, in retrospect anyway. At the time I was still in shock over this whole no-VATER thing.

Well, anyway...(Yetta style)...


...he had some interesting ideas for doing this MRI. He said they would do the MRI both with him laying face down and face up and then compare the images to see if his spinal cord moves like it should. The decision to operate on a fatty filum tethered cord is pretty controversial. The problem is, in my book, two-fold:


1) Wait until he has symptoms and we've basically waited until he has nerve damage and you don't grow those nerves back. It's done. Over.


2) Nearly all of the symptoms of a tethered cord are symptoms of other issues he has going on already...how on EARTH would we know if it's caused by the tethered cord or from something else?


We need a good MRI read by an experienced neurosurgeon. That's all there is to it.


Golly how are we supposed to make decisions like these? I mean, how the heck am I supposed to decide which of the four (yes...FOUR) neurosurgeons to go with? Where is this in the What To Expect The First Year book????? Chapter 22: How to pick a neurosurgeon? If only...sigh...


Well, anyway...

We got the chart notes from U of C in the mail today and I am so amused and freaked out.


Amused because it refers to a "questionable diagnosis of Vater's syndrome" and "it seems unlikely that he has Vater's."

Freaked out because he seems to believe Ben has Caudal Regression Syndrome. Ugh. We have an appointment to consult the neurogenetics team at U of C. Hmmmmm...Neurogeneticists...sounds to me like a bunch of kids who couldn't pick a major or didn't want to pay back their student loans...I told Dr. Frim as much and he seemed amused. Hee hee. Well, it is what it is I guess.

And amused again because the notes end with this --

"It seems Benjamin's mom is very involved and very well read on the subject of Vater's/tethered cord/congenital anomalies."

Darn right I am! Ha! And I schooled you about VATER, Dr. Frim! Schooled you! Where's my phone call, dude???


So, I'm still on the fence about where to make home base for Ben's medical stuff. I wasn't overwhelmingly swayed in either direction by any of the doctors we consulted. It seems that it won't be a clear decision like going to Cincinnati was. Argh...and I HATE making decisions! I'm about to toss a coin. Or make Mike decide.

That said, I'm so so sooooo thankful that we have the power to choose Ben's doctors. I shudder to think how tortured we would be if that power were taken away from us by ... oh ... say socialized medicine or an HMO. I mean, when I think of all the Canadians I met in Cincinnati, where the heck would we go?? Mexico??? Well, anyway...


Doesn't make the choice easier, though.