September 29, 2007

Rolling over!

What the heck kind of surgery did Ben get?! Not more than three days post-surgery Ben started rolling over from his back to his front!

(Thank you Barts family for the sweet gift card we used to buy Ben this Taggies ball which inspired the sudden rolling!)

We read somewhere that kids who go through lots of surgeries and hospital stays can end up with some developmental delays due to being unconscious or medicated so much and spending so much time in a rather under-stimulating environment. One place even suggested to count on 1-month of delay per surgery. HA!

PS - Ben's mom is so highly addicted to the internet that she finally broke down and bought a new power cable for her laptop today. Yay.

September 28, 2007

Surgery follow-up today

Turns out the hotel has a computer we can use in the business center. Phew.

Ben is 4 days past surgery and doing beautifully! Yesterday morning he woke up cooing and laughing in his crib.

We took Ben back to the hospital for a surgery follow-up appointment this morning. He got his tummy x-rayed and all looks good. Then we met with Dr. Pena. We told him that we think he might be running some sort of scam because NO WAY did this baby just have surgery 4 days ago. He seemed to find it amusing. He said it's hard to convince the anesthesiologists to take it easy on the pain meds because nobody can really believe how quick and painless the recovery is.

We also talked about the next surgery - the colostomy reversal. Looks like we'll be able to schedule it before the end of the year. Surgery should last about 2.5-hours and will be far less complicated than the last surgery. However, the recovery from this surgery will be much harder because they are going through the abdominal wall. He should stay in the hospital about 5 days.

Now we're left contemplating how on Earth we're going to hand him over again!

September 26, 2007

He's out!

Ben busted outta the hospital this afternoon. Hurrah! We never quite believe he's getting out until he's in his car seat. All went well and we're nestled into a nearby hotel.

We found out that we can't actually leave the area, though. Didn't know that until today, so we've been making and breaking all sorts of plans. We originally thought we wouldn't return to the hospital until two weeks after surgery, but it turns out he has to keep a urinary catheter in for a week. Yikes! Didn't know that! Dr. Pena wants to see him this Friday and then again on Monday to take out the catheter. And then we're supposed return again a week later to get stitches removed. All news to us! So, it looks like we'll be sticking around the Cincinnati area for quite a while.

Ben is doing fabulous. He seems a little uncomfortable at times (there are too many stitches to count), but it's nothing a little Tylenol 3 mixed with cuddling can't fix. Ben's parents are learning yet another insane diaper-changing routine which involves 2 diapers, a syringe, gauze, bacitracin, water, q-tips, and a partridge in a pear tree.

Starting tomorrow we'll be without a computer because we forgot our power cable. Boo hoo! So, this will probably be the last post for a while....awwww.

Outta here?

The surgical team did rounds a few minutes ago and we've heard for the third time now that we'll probably be able to check Benji outta here today!
He's been off the IV fluids and pain-killers since yesterday afternoon and has seemed pretty comfortable. He's eating like a champ, too. There have been some shenanigans with the monitors and vitals readings. For some reason his blood pressure has been high a couple of times and his respiration rate kept setting off the monitor. We're all pretty confident it's just a baby-thing or monitor-thing and nothing to really be concerned about. Of course, this always happens at night, so his mama has gotten very little sleep.
He's back to his normal, awake, alert, smiley self...and boy is that great to see!

September 25, 2007

Snug as a bug

Ben is back to his old self today and it's a real treat to finally see him smiling and playing again. The hospital's Child Life services has been taking good care of him. They brought him a mobile for his's the exact same one we have at home! They also brought him a play mat, a bouncy chair, and a WubbaNub.

Is this hell?

It's hard to end a day like today. I've got 5 more minutes before this day, the day we've been anticipating since May 9, is over. It's hard not to think about things and become philosophical.

I sometimes ask myself, "Is this what hell feels like?"

It sure as hell feels like hell sometimes.

But then you get a good, cold smack in the face and realize what hell really is. Hell is not ever getting the chance to have a Benjamin in your life to worry over. Hell is having a Benjamin with a terminal illness. When you're in a children's hospital, you can easily find hell happening a couple of rooms over.

We are so, so lucky. Lucky, blessed, and loved.

September 24, 2007

Ben's buddies

Though the amazing power of the internet, before we ever stepped foot in Cincinnati I got to "meet" two other moms who were bringing their children to the same hospital for the same surgery on the same day. Can you believe that?!

Well, we have so enjoyed getting to know these families now in person. It's been so, so great to have other parents around that we can really relate to and who are sharing a similar experience. I was chatting with one of the other moms this morning and we kept giving each other goosebumps just from having those I-know-exactly-what-you-mean moments. Priceless. Important. Theraputic.

Meet Michael! He's a lovely little boy from the East coast. He spent a great deal of his young life battling a very serious congenital heart defect - and he's winning that battle BIG TIME. His surgery this morning went well just like Ben's and he's just upstairs from us recovering in the CICU.

Violet Faith is the stinkin cute little girl down the hall. She was also scheduled for our surgery, but everything had to be canceled due to issues with her airway. Her mom was here with her all by herself for days and days and her dad has been able to join them finally. They have had some VERY difficult decisions to make lately and are facing a rather serious heart surgery tomorrow.

We've run into several other families here doing the same thing as we are. It sure makes our life feel way less cuckoo-bananas!

Please help us cheer on Michael and Violet Faith. Especially give it your best for Violet Faith and her family...tomorrow is not going to be easy for them.

Even sweeter to hold

We got to hold him for a little while in the PACU. He was totally knocked out. He has IVs in each arm because they scrubbed him from the armpits down for surgery. When they transported him from the PACU to the PICU they let his mama sit on the gurney and hold him. He's snoozing in his crib now, hooked up to fluids, narcotic pumps, and antibiotics. He's got his monitors on as well. They have the monitors hooked up to a system that will page the nurse if anything goes wonky. Very cool.
He woke up for a short while and fussed about as much as he could considering how tired he seems. He downed about 2 ounces of milk and fell back asleep. He seems to be resting peacefully. Soo....all is good.

Sweet recovery

Here's our little guy in the PACU. His face was a little swollen from the face-down position he was in for the surgery. They gave him oxygen from a vanilla-scented mask. Sweet!

Out of surgery - AOK

We just spoke with Ben's surgeon. Ben's surgery is done and he's doing just fine. Dr. Pena said, "Everything was as we expected it to be." Sweeter words we can't imagine.

They've prepared us for his face to be swollen and some other post-surgical stuff. We're waiting to get paged to the recovery room now.

At one point during surgery (2-hours long, by the way) we got paged and went running up to the desk. The receptionist said, "You have an e-card." We freaked out a little...what's an e-card?!? Oh my god, does "e" stand for "emergency" or something????

Well, was our e-cards from you!!! A nice man handed us a folder filled with a couple of dozen notes from all corners of our friends and family. We just sat there together and read over them and beamed. THANK YOU so much!!!! Now we can't wait to read them to Benji.

September 23, 2007


Cincinnati Children's Hospital does e-cards!

Just follow this link - e-card
- Select a card
- Enter the Ben's room number (B557)
- Write a short message
- When you send it, a hospital volunteer will print it and hand deliver it to Ben. We'll make sure to read it to him and put it someplace for him to see. Too cute, right!


We're all checked in and admitted to the hospital for surgery now and they've started the surgery prep process. It's probably not even worth saying that, of course, Ben isn't a bit disturbed by any of this. He is smiling at everyone and has already taken a nap...

Again, this place is amazing.

September 22, 2007

Bones to pick

Now that we're finally talking to the right people, we have a few bones to pick with our previous healthcare professionals.

1 - Our general surgeon should have cleaned out Ben colon when she did the colostomy. He's got gobs of meconium still in there and it all has to be cleaned out for the surgery.

2 - Strike two against the general surgeon - she should have put more distance between the two stomas so that we could bag just the functioning stoma and leave the non-functioning one open. This would have prevented more stool from entering the lower part of the colon that attaches to the bladder.

3 - We never should have been admitted to the hospital for a urinary tract infection. Chances are, since Ben didn't ever have a fever, it was simply fecal contamination because of the improper conneciton between the colon and bladder. Basically, Ben got poked in all four limbs while they tried to start an IV, spent three days in the hospital, and had ten days of antibiotics for NOTHING.

4 - We have so many bones to pick with our former orthopedist that it's impossible to even begin.

September 21, 2007

Loooong day!

Well we're finally back at the hotel after a looooong day of tests and consults. We're so exhausted and overwhelmed. It's hard to even know where to begin.

How about the best first?

The intestinal defect Ben has is not nearly as bad as we had originally been told. From the very beginning everyone told us he had a high defect. A high defect means the most complicated surgery and the poorest results from surgery. Well, after today's colostogram both the radiologist and the surgeon told us that his defect isn't high at fact, it's LOW. Another factor in this defect involves his urinary tract and this is also the most mild form (bulbar fistula). This doens't just mean his surgery will be more simple (only 2.5 hours instead of 5), most importantly this means big things for the rest of his life. This means he will have an 85% chance of being able to control when he uses the bathroom. This is much more than we have hoped for and it seems almost too good to be true.

The renal ultrasound he had today showed NO hydronephrosis. We have no idea what to think about this. All along we've been taking him to see a nephrologist to check on the progress of hydronephrosis. Now, all of a sudden, it's not there? We're probably going to re-address this in the future with a eurodynamics evaluation or something.

We had a couple of x-rays followed by a consultation with an orthopedist. He was very, very thorough in going over all of Ben's orthopedic issues. (FINALLY!! I think I'm going to go prank call our previous orthopedist when I'm doing writing here.) The hemivertebra in the upper portion of Ben's back isn't causing too much trouble - just a 19-degree curve to the right. However, we found out about some previously unknown issues with his lower back. There are fusions and whatnot going on in his lower back that are causing a 35-degree curve forward. This could be a problem and would require pretty complicated surgery at some point in the future. It also looks like he's missing his coccyx, but maybe it will still grow?

He also checked out what was going on with one of Ben's legs growing bigger than the other. He pretty much said it's probably just going to be a Ben-thing - he'll always have one larger leg and it's due to some missing nerves.

We were told that Ben will "probably walk" and would mostly likely have a limp. It's still a wait-and-see thing. He wants to follow up with Ben in about 4-6 months to check on how things progress. It's a bit of a hard pill to swallow what with the "probably walk" and stuff. But, we feel like we're in very good hands here.

Speaking of which - THIS PLACE IS AMAZING. It's hard to even write how fabulous this hospital is. For starters, we haven't had to explain anything to anyone. All of the equipment looks new and fabulous, the pictures we've seen on the monitors during his exams have looked 100x sharper than anything we've seen before. People have been amazing. Amazing, amazing, amazing.

September 20, 2007

Introducing...Uncle Rick & Aunt George!!!

Last weekend Ben got to meet his Uncle Rick & Aunt George at the pancake house. Good times! But if you wanna see the real cute pictures you gotta check out Uncle Rick's ridiculously cute ones here. Please note the drool everywhere. Oh yeah, and doesn't he have on the darn cutest outfit what with those leather elephant shoes and the lovely "Blame it on the cat" shirt? (Thanks Lyla!)

September 19, 2007

What can you do? (Part 2)

We were talking tonight and wanted to add in our list of "needs"...

...with all the new tests he'll be getting it would be nice not to have any more unfortunate surprises turn up (anomalies, defects, etc). Of course, on the flip side, if there is something else wrong that we haven't discovered yet, we'd like for one of these tests to find it.

Does that make sense? Hmmm...let's try again...

We'd like there to be nothing more to be discovered, yet if there is something more going on we'd like to know.

Yeah, this isn't making much sense! Oh well. We'd better get back to packing.

What can you do?

Tomorrow morning we'll hit the road for Cincinnati. Yeah, road. We've decided to skip the flight due to the 50lb luggage limit and other small inconveniences. As we get headed off to surgery, many people have asked us what they can do to help. Here's what we need.

We need... travel to and from the hospital.
...the ability to make the right decisions when choices need to be made.
...the insurance to do it's part.
...the strength to emotionally hold it together for Ben.
...soft, safe places to fall when we can't hold it together any more.
...Ben to be comfortable, happy, and pain-free.
...our cats to be well-cared for by the cat sitter.
...the IV line, central line, and whatever else to go in smoothly and remain stable.
...the anesthesia and intubation to go perfectly.
...the doctors to be at their very best and do their best work.
...Ben to quickly take over breathing on his own after surgery.
...extubation to go perfectly.
...recovery to be as quick and painless as possible.
...Ben to remain infection-free.
...sleep and food.

Now most of these things can't be provided by our family and friends. But maybe you could all include little requests for these things in your thoughts, wishes and prayers. Thanks in advance a hundred times over.

Happy Bensday

Even though I'm a little outta focus, my expression is just too darn cute not to share.
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September 18, 2007


Am I okay? If you don't want to know the truthful answer, stop reading right now. I've been up since 3:30am, so this is probably a little overly-emotional.

Am I okay?

Sure I am, you know, in the our-son-is-getting-surgery-and-I'm-scared-out-of-my-little-mind kinda way.

So, really, no I'm not okay.

More and more happy moments these days have a tinge of sadness. That horrible thought I've worked so hard to keep at bay freely pops into my head without warning - what if. What if this is the last time Ben gets to do this? What if this is the last time this person get to see him? What if? What if? What if? It's nauseating.

Scratch that. I said I'd be truthful. The truth is I'm not sure I've had a genuinely happy moment in months. I've just had a few non-terrifying moments. Mostly I've been numb. It's a trick I learned the day he was born and I've perfected it during countless doctors' appointments and tests. When I start to feel scared and the tears start to surface I just shut down. I turn it all off telling myself - I will NOT cry now. I will NOT let this get to me. I will NOT let Ben see me freaking out. I will be strong and I will hold it together somehow.

I have the most sickening compulsion. He has all of these outfits in the closet that he hasn't worn yet. They were gifts. You know, those really really nice outfits you'd never buy for your own kids because they're silly expensive. Instead of putting them away with the generic "everyday" clothes, you hang them up on hangers. They're just that special. I've been so excited to see them on him, but they're still a little too big. Now, every time I open the closet I see them hanging there and I fight the urge to put them on know...just in case. Like if he wears those nice outfits now, he won't have any left to be buried in so that option is off the table. Horrible feeling.

I spend every waking moment, and probably a lot of sleeping moments, planning for this surgery - what happens during it, what are the risks, what to expect, what are the options, what to pack, what recovery is like, and on and on and on. I think the worst part about the circumstances surrounding his birth and the NICU times were that they were totally unexpected. I'm trying to guard myself against the unexpected happening again. It's exhausting and completely consuming.

We're suddenly really into cleaning our house. Even Mike (yes, Mike!) has been going on about how we need to clean this room or that room and how we should just start being more organized. Like if our home is clean enough, Ben will just HAVE to come back to it.

No, definitely not okay. When you ask, I'll tell you things are fine. I will probably even joke and laugh. Sorry, but it's a lie. I don't want you to be not-okay, too. But, really, if you truly want to know - I am not okay. Please, for the love of god, don't tell me I'm overreacting. Not unless you'll be signing the papers that say you acknowledge there is a chance of death from this surgery. Maybe you should feel pleased that I'm actually showing some emotion instead of being a robot. Can you imagine how exhausting it is to "be okay" 99% of the time?

I know he'll be fine. I know we're doing our best. I know how strong he is. I know I will never again drive away from a hospital without my baby in the car seat. I know all this worrying isn't helping. I know, I know, I know. What I don't know is how to make it stop. Or even if I should. Aren't you supposed to be worried at times like these? If so, then maybe I'm okay after all.

September 17, 2007

Uh ohhhhh....we have video!

If you loved the pictures of Ben, wait until you see this guy in motion! Yeah, that's right...we have video!!! I just now noticed a little tool for uploading videos to this blog, so here you go.

Behold! Ben will now show you how much he loves his Sassy Mobile and the Peekaboo Piano (thank you Linda Kranz). The piano only plays music if you kick it. Watch Ben freak out when the music stops. Hee hee.

I'm getting a doctorate and M.D.!

Yep. I'm getting a doctorate in Ben Studies and a Web M.D.

I have probably spent hundreds of hours researching this crap Ben has and the surgeries to fix it all and the side effects and the long-term possibilities and on and on and on. I don't know what the point is. I think I'm pretty much preparing to step in an finish the surgery if need. Like, what if Dr. Pena is mid-surgery and suddenly struck with Bell's Palsy and can't finish?

Someone would come inform us in the waiting room and I'd jump up and say, "Oh no problem! I'll just scrub in and sew up that midline posterior sagittal incision!"

September 16, 2007

One week

In one week Ben is scheduled for his surgery.

In one week we're going to give Ben kisses and hand his life over to strangers again.

In one week will the doctors know how much we love him? Will they know how important it is for them to do a good job? Will they know what it would mean for us to lose him?

In one week we'll be making deals with god again. We'll be begging for his life and for his future.

In one week we'll watch seconds and minutes and hours tick by on a clock, our lives measured in the smallest of increments.

September 15, 2007

NY Times shout-out for Cincy

Mark Lyons for The New York Times

There was a lovely article in the New York Times today about the Cincinnati Children's Hospital and there's even a picture of Ben's surgeon, Dr. Pena.

"While some hospitals might simply stop at the surgery, Cincinnati Children’s sees part of its job as helping each patient learn to live as normal a life as possible."

Click here to read the article.

No diabetes!

I finally, finally, finally took the 2-hour glucose test and PASSED! Because I had gestational diabetes there is a 50% chance I will develop Type 2 diabetes. I'm supposed to get tested every year. Considering our track record this summer I've really been putting it off. I finally bit the bullet, took the test, and passed! YAY!!!

In other news, we got our stolen car back from the impound lot. We had the wrecking company "detail" the car - clean it out and stuff. We told them to toss everything. Well, when we got the car it wasn't exactly what you'd call clean (and the smell was something else). They tossed mostly everything...just not all of the drugs. Yeah, we owned some crack for a while. I called the police to find out what to do with the drugs and they told me that they took all the drugs they needed for a conviction already, so I could just suck the rest up with a dust buster or something. comment! We took the car over to Fast Eddie's Car Wash and they really cleaned it up nice. Looks like they took out the carpet and everything. No sign of crack and even better - no smell!

- becca

September 13, 2007

Nutty dreams

So I had this dream...okay, probably more of a nightmare...about the hospital last night. We checked into Cincinnati Children's Hospital and it was total chaos. It was huge and people were everywhere. Everyone was busy with something and we didn't know where to go. We finally found out that our room was Room 220 and we wandered the halls until we found it. Nobody was in there but the room was horribly trashed. Instead of being private room, it appeared we would be sharing it with at least three other families and they had their stuff all over the floor.

I flipped out and went to go see if I could switch to another room. I just kept wandering the halls looking for someone to talk to about it but everyone was busy. At one point I knocked over someone's medical equipment. Suddenly I couldn't remember where Benjamin was. Did I take him with me or did I leave him in the room? I started searching for him and I finally found him sitting on a bookshelf...with a bunch of cigarettes in his mouth!!!! I was so mad, it woke me up.

Gee, think I'm getting a little anxious about this surgery?

- becca

p.s. - I think I have a little cold. Bah!

September 12, 2007

The itinerary

We got our "itinerary" in the mail. Sounds nice, doesn't it? Like we're going on vacation or something.



Friday, September 21, 2007:

8:45 a.m. Renal Ultra Sound
9:30 a.m. Colostogram
11:30 a.m. Ortho New Visit with Dr. Mehlman
1:00 p.m. Clinic Visit with Dr. Peña


Sunday, September 23, 2007:

10:00 a.m. Hospital Admission for Surgery Prep

NOTE: Surgery start times are sometimes subject to change


Monday, September 24, 2007:

TBD PSARP/Cystoscopy/Possible Laporotomy with Dr. Peña

Benjamin will be in the hospital three (3) to five (5) days assuming no problems or complications. You will need to stay in town for at least 7 days total depending on healing.


Well, there it is. The itinerary. Our lives measured out in hours and minutes. The reality of sending Ben back to surgery is mapped out clearly in black and white now. We're comforted somewhat in knowing for certain that we are going to absolutely the best surgeon for this procedure. He's the inventor, the guy for which it's named, after all. Wish that was enough for us.

September 11, 2007

Introducing...Cousin Aaron!!!

This is the guy that Ben looks up to...his mentor, his buddy, his Jedi trainer...his big cousin, Aaron.

September 10, 2007

Ruling out the hip - Step 2

We saw the pediatrician today and got the radiology report back from Ben's hip and spinal ultrasounds. No indication of hip dysplasia! So that's good...unless it means that this unequal leg business is being caused by a spinal cord problem. This seems to be the trend with all of our news - it's all good and bad at the same time. Nothing is black and white anymore.

We asked the neurosurgeon, Dr. Mangano, at Cincinnati Children's Hospital to review his records.
He recommends getting an orthopedic and eurodynamics evaluation at 1-year-old. We're also supposed to keep close watch that he meets his developmental milestones. So, we're kinda, sorta, maybe thinking about letting this spinal cord thing rest for a little bit.

In other news...we're about to go pick up Betty, our stolen-and-recovered Volvo, from the impound lot where the cops towed her. The guy was really excited to tell us they did a great job cleaning her up and they found cocaine in the back seat, but not to worry because they just "vacuumed it all up"....uh huh.

September 09, 2007

4 Months Old!

Boo yah!

Ben is officially 4-months-old today! Guess what he got for his birthday.....

A new digital camera! You may remember our digital camera had an unfortunate ride through the washing machine and although it still turns on it's definitely not working properly. You certainly have noticed the lack of new pictures on Ben's website! We've been doing our best with camera-phone pictures, but they just aren't cutting it. So, we got Ben his very own digital camera for his birthday and you can look forward to seeing more pictures here.

(You're welcome.)

September 07, 2007

What makes Ben mad?

Ben has had countless IVs, more than a few urinary catheters, several blood draws, MRIs, VCUG, kidney scan, and who knows what else. What makes Ben mad?


Yeah, that's right, Ben hates being on his tummy. He had an ultrasound of his hips first today. He laid on his side as happy as could be. The technician even remarked, "What a good baby!" Oh my yes. Then it was time for the spinal ultrasound which meant Ben had to go on his stomach. Was he ever mad! He squirmed and screamed blood murder. He cried less for the four (yes four) tries at establishing an IV line in the ER last week. He cried until he was read in the face and sweaty.

And when we were done and turned him back over? He was our perfectly happy guy. Sheesh!

We won't have the results from the radiologist and such until next week. So, once again we are left for a few days to pour over images we could never hope to interpret.

September 06, 2007

Ruling out the hip - step 1

We got our radiology report back from the hip x-ray and it says "no abnormality demonstrated." So, step 1 of ruling out hip dysplasia is done.

Step 2 is to get an ultrasound of his hip to reconfirm. We have that scheduled for tomorrow.

We're almost hoping it IS a hip problem, though, because it would sure be better than a spinal cord problem. One of the signs of a spinal cord problem is asymmetrical growth - one leg growing bigger than the other. Arghhhhh. So, we're looking into getting another ultrasound of his spine. His first spinal ultrasound was in the NICU which showed an abnormality they originally called a "tethered cord", but have since revised to "fatty filum" with later MRIs. We're supposed to get another MRI when he's a year old to check on his spinal cord, but we're a little more than nervous about waiting. With the spinal cord once the damage is done there's not much you can do to fix it. So, if this is a fatty filum or tethered cord or whathaveyou causing the unequal leg growth, we need to know now.

September 04, 2007

Symmetry is good

Something we learned today: symmetry is good...especially when it comes to fat creases on a baby's thighs. Sigh...

We took Ben to the pediatrician for a follow-up from this urinary tract infection. That checked out just fine (yay!) and we'll be back again for another follow-up once he's finished his antibiotics. We sort of randomly mentioned to the pediatrician that we noticed he has more fat rolls on one thigh than the other. No big deal, right?

Turns out maybe it is. It's one of the signs of hip dysplasia (yeah, like what your neighbor's German Shepherd had).

So, off we went to the hospital again for an x-ray of Ben's hips. He loved every minute of it, of course, and was the lab tech's "favorite patient ever." We won't have the results for 48-hours. Which leave us thinking...what next?!

Going to the hospital was interesting. It was the first time we've been back to Good Shepherd since delivery. We visited our labor and delivery nurse which was so, so nice. Then we drove back home and suddenly realized - so THIS is what it feels like to drive home from Good Shepherd with your baby IN the car seat. Very nice indeed.

September 02, 2007


We don't like to count our chickens before they're hatched, so we don't say we're going home for sure until we've got the boy strapped in the car seat. And as you can see...

...going home!

Love my new toy

We're still waiting for news on another urine sample taken this morning. We're also waiting to see the nephrologist. Pretty uneventful morning!

September 01, 2007

Bladder schmadder

It turns out the infection is in Ben's bladder. The crazy test he did today showed that his kidneys are fine. Big yay! So, now it's all about treating a bladder infection. The nephrologist said he might get to go home "soon". When pressed about what "soon" might mean he said, "maybe Sunday." So, there it is.


Ben became a superhero this afternoon. They pumped him full of radioactive material and scanned his kidneys. As usual, he shocked everyone with how calm and cool he was with the whole thing. You could tell the tech was nervous and pretty much planning on spending a few hours with a screaming, wriggling baby to try to scan. Well, we put Ben face-down on this board, stapped his arms to his sides and strapped his legs together. He didn't even wimper. He just fell asleep and actually got a little cranky when we took him out! What a guy...

What to do while waiting for tests...

Eat your book!

Back in the saddle

Well we're back in the saddle again...we're checked back into the hospital. We found some weird stuff in Ben's diaper today and called the nephrologist about it. His office told us to bring him to the emergency room. His urine tested positive for blood - and his urine sample from yesterday finally came back from the lab testing positive for infection.

So, it looks like we're dealing with either a bladder infection or kidney infection.

He's on IV antibiotics. After THREE attempts to start a line, I think the ER nurses were feeling might guilty for not listening to me about Ben's IV history in the first place. We'll get his kidneys scanned again tomorrow to try to figure it out. There's a possibility we'll be here through Tuesday. Ugh.

I'm typing this from the same ol' computer I used to make updates from when Ben was in the NICU - it's in the waiting room at the hospital. So much of being here feels familiar, but this time is so different, too. This time we're the experts. This time we definitely know more about Ben's overall health than any of the people we've met here so far. It took a lot of convincing to get the ER doc to believe there was definitely NOT stool in his diaper...what part of a colostomy bag didn't he understand?? I had a nurse ask me if I "knew medical stuff" and I had a room full of interns just about fall over when I was talking with the nephrologist about Ben's upcoming distal colostogram. Finally, it appears I am the amateur doctor I always wanted to be.

On the bright side, you'd never know Ben had any troubles at all. He's happy as a lark, flirting with all the nurses, giving big smiles to all the doctors, and generally having a good time. We're tucked into a really nice room in the pediatric unit (room 216...for some reason we liked the number) and have met some truly fabulous nurses. Unlike in the NICU, we can actually spend the night next to him. Best of all, there is free coffee.

We'll try to keep regular updates here.