December 23, 2007

Happy Holidays

We're back at Ben's grandparents' home in Ohio and living the life! We're eating like little pigs and relaxing and it's about time.

If you're ever interested in eating the most delicious vegetable soup you've ever had in your whole life, stop by and visit Aunt Betty Jo in Virginia. Thank you, Virginia Bateys, for a wonderful visit...and even more wonderful soup. Hee hee.

Ben is simply thriving. It's almost like he knows he's gotten his passport out of surgery land and is just making leaps and bounds. He's asserting his personality all over the place...reaching out for people...crying and screaming for what he wants...laughing...throwing things...eating oatmeal and carrots and pears...trying out a sippy cup...and very nearly crawling.

Happy holidays everyone. We've gotten just what we wanted this year and we hope you do, too.

December 17, 2007

Clearing up

Looks like the diaper rash from crazytown is clearing up. Thanks so much, everyone, for the advice!!! Here is our new and improved diaper routine:

1) Hand the kid a toy - OR ELSE
2) Spray him off with a water bottle - NO wipes!
3) Wipe him down with some gauze
4) Smear on a layer of Aquaphor using a popsicle stick - wayyyy less messy!
5) Sprinkle with powder
6) Diaper

Done!

Can you believe it? That's it!

Mike's good friend, Kevin, sent us a message -

I hope all things taken for granted by others are given back to Ben. I am impressed by modern medicine and hope it comes through big time for him!

We couldn't agree more.

We gave Ben a bath last night and for the first time ever washed his tummy without worry. You know how they teach you to always wash the bum last because it's the dirtiest? Well, we always used to wash his tummy last when he had the colostomy. Not any more!

Then, after his bath, we used baby oil and lotion on him for the first time ever. We could never do that before because stuff like that would interfere with the adhesive on his colostomy bag. No more!

And then we just put a diaper on him. How simple! And what a difference.

We're officially getting back some things taken for granted by others and it sure feels great. Modern medicine has come through big for him indeed.

December 15, 2007

Left Cincinnati in the dust!

Ben's clinic appointment went wonderfully on Friday morning and we were given the all-clear! We spent pretty much all day Friday packing and saying goodbyes to all of the wonderful people we've gotten to know in Cincinnati. Once we got the car packed we really had to wonder how such a little boy has so much luggage.

Ben has still been vomiting and it concerns us a little. We still figure it must just be because he went without food for so long his tummy is still trying to sort out what to do.

More of an issue now, though, is the rather ridiculous diaper rash going on. NO it's not like any diaper rash you've ever seen (unless your kid has the same issues as Ben). It's really indescribeable. Let's just say it is so bad it's bleeding. Luckily, we've stockpiled an arsenal of creams and powders and tricks to try to combat it. Probably will just take some time, though. Poor guy!

December 13, 2007

Sleep is nice

Yes, we got some serious sleep last night and it was great. First things first, we gotta tell you about what was going on around the Ronald McDonald House last night. Oh my gosh, people are SO nice!

A local fire department organization hosted a Christmas celebration and it was so outrageous. First, Santa arrived on a fire truck. You should have seen the looks on these kids' faces when Santa jumped down from the fire truck. He came inside and sat in a big armchair in front of one of the Christmas trees (there must be a dozen trees here). Then the kids (and some adults, too) took turns sitting on his lap. Some kids were hooked up to feeding tubes, some had traechs, some hopped out of wheelchairs, and some stayed in their wheelchairs and put their heads on Santa's shoulder. You can probably guess what most of them asked for.

"I just want to be home with my family for Christmas."

"I just want my baby sister to feel better."

"I want my baby's surgery to go well."

"I want my big brother to get a kidney."

And so on...

And there was one kid who brought a list - so cute!

They have a pretty awesome train set up in the lobby here. Well, the train isn't all that - it just goes around in a big oval - but, the lights and everything else set up for it to go around are just amazing. Ben goes into an over-stimulation coma whenever he's within 3-feet of the thing.


Okay, back to the fire department. Not only did they bring Santa on a fire truck, they brought gifts for every single family staying here AND all sorts of supplies for the house. Those laundry baskets behind the boys are filled with all sorts of little gifts for every family.
Boy did we sleep last night! Once we'd recovered from the barf-o-rama (new sheets, blankets, pillowcases, and bedspread...yeah, it was a doozy), we crashed. Mike walked Ben around the building and met some guys he could watch basketball with. He must have been getting sick of all the mom-chat going on around this place!

We woke up with a start at about 6:00am because Ben was doing this hacking cough that sounded suspicious. Turned out it was just a cough...but he desperately needed a diaper change. Desperately = bath time.

Once the boy was good and cleaned up we all went back to bed...until about 10:30am!! We're like new people today.

Now we're sitting in the house kitchen. Ben is playing with toys in his stroller, Grandma Linda is crocheting another baby blanket, Mike is eating leftover pasta from last night, Granddad is drinking coffee, and becca is about to publish this new post to the blog...good times!

Leaving the hospital


December 12, 2007

Wouldn't you know it as soon as I sent that last update Ben vomited all over our bed. Ew! He seems fine now. The excitement never ends!
Discharged today! We're getting BJ tucked into the RMH. Will update more later...zzzzzzzzzzzzzz.

What a difference a day makes

We have our smiles back!



Ben is 200% better today. He's awake and happy and alert and back to his old self. His IV blew last night and there was some to-do about how to get another one started and blah blah blah. Mike and Ben's grandparents convinced them to just forget the IV. Hurrah!

Now that he's off the IV analgesic his eyes have improved a lot. They were getting so puffy! But, now they're nearly back to normal.

He was allowed to start eating Pedialyte last night and then back to breastmilk this morning. Unfortunately, it didn't settle with him and came back up...all over him and his dad. Eww.



He has been pooping pretty much non-stop. We've probably used 10 diapers in the last 3 hours. This is typical and should subside after a while. Let's just hope his little bum can fight back the diaper rash.

He's sleeping now. When he wakes up we'll try feeding him again. Hopefully that goes better. Poor guy eats like a starving person...40-some-hours without food will do that to ya!
They let Ben have some Pedialyte last night which he sucked down with a passion!
It's 3:33am and I'm wide awake with some sort of stomach bug...yuck! - becca

December 11, 2007

We got poop for Hanukkah!

It's the last night of Hanukkah and we got the best present. For the first time in his life, our baby pooped IN HIS DIAPER!!!!!!

We are beyond happy. Beyond.

Sorry, no pictures. Ha ha ha.

Afternoon picture


They've taken Ben off of the continuous analgesic because it was making his eyes very puffy and he was really itching a lot. Now we just give him pain medicine through the PCA.

He's mostly sleeping, which is good, because when he's awake he's not very happy. We've been told this is expected the day after surgery. So, we're finding ways to pass the time - going to the cafeteria, walking to the Ronald McDonald House, poking around the gift shop, and trying to figure out the hospital PA announcement coding system.

And finally...some pictures!

In the PACU just after surgery...holding dad's hand.


This morning. His mouth is very dry because he hasn't been allowed to eat anything for about 33-hours. We finally got him to take his pacifier when we wet it in the sink. His eyes are pretty puffy from the analgesic. His voice is all hoarse.


Last night when we found out it was okay to pick him up.


This morning, in a considerably better mood. No smiles yet, though. We'll all feel like things are okay once we get one of his amazing smiles.


Pretty much everyone who stops in gives a listen to his tummy. Once they hear strong sounds in there he should be allowed to start eating some Pedialyte again. Can't wait! It's hard to tell if he's fussing from hunger or from pain.

Still sleeping

Ben has been mostly sleeping since surgery. He's on an continuous Fentanyl analgesic drip with a PCA button we can push to give him more pain relief. So, that's where the "mostly" comes into play...we've been using that button! When he's awake he is definitely uncomfortable. He frowns and gives out pathetic little whines and moans. The incision looks to be about 4-inches long and really looks nice considering!

He was considerably more distressed last night for a couple of hours and nothing would soothe him (not even the pain button). The nurses even paged the surgical resident on-call to come check things out. Everything looked fine, so he suggested picking Ben up. You're probably thinking, "Well duh!" - but we had been advised not to lift him, let him sit up, or anything that would put strain on his incision. So, Mike picked him up and that did the trick.

In other news....we finally got a room at the Ronald McDonald House. Such a relief! It's so great to be able to just walk across the street from the hospital to a nice, cozy room and good food. Even better - it's cheap!

December 10, 2007

Out of PACU and resting peacefully.
Out of surgery and it went well. Waiting to see him in PACU.

Still waiting

Still waiting with no updates. Just found out (from watching the TV here in the waiting room) about Great Brit's new Prime Minister. Tells you how out of it we've been lately!

Started surgery

We were just paged and they said they've started surgery. Anesthesia went well and he's doing fine.

Off to surgery

We handed Ben off at the OR doors a few minutes ago. He was giving big smiles to everyone when we left which makes it easier. They told us to expect a 4-hour wait because they've added a cystoscopy to the schedule. So we wait.

Monday Morning



Ben had a pretty decent night considering. His dad and Grandma Linda spent the night with him so his mama could get some sleep at the hotel. SOOOOO nice. Ben spent most of the night cuddled up with them.

Even though he's been on only pedialyte since 9:30am Sunday and nothing by mouth since 2:00am, he's still his usual happy self.

He's been throwing up a little this morning which is kinda sad. He'll be fine one minute and then starts with some pretty pathetic fussing. It's like he's just too tired to fuss. Then he just spits up a little and wants a cuddle. He's had a few more stoma irrigations this morning just to make sure things are really They're telling us his surgery is schedule for 8:45am. We're pretty much just waiting around now.

Yesterday they explained to us some of the risks to this surgery. They'll be doing lots of checking around in there to make sure nothing is damaged or whatever. Then they'll sew it all up. Seems like infection is the most likely complication post-surgery. So, here's hoping they don't find any other problems in there and that Ben stay infection-free.

We'll keep updating here. Thanks, everyone, for your amazing support.

Sunday night

It's been good all-around. Ben spent most of last night playing and flirting.


With bowel "clean-outs" every hour, this outfit didn't last, of course.
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December 09, 2007

7 Months Old!!

Ben is 7 months old today. Wow! Just 7-months-ago today he came into this world and changed our lives forever. This time 7-months-ago he was getting all sorts of tests and scans to sort out what all was going on with him. Now 7-months-later he's back in the hospital again.



The nurse had a green frog Wubbanub waiting for him. The Child Life specialists people brought him all sorts of toys. Basically he's been spending the whole time here smiling and playing. He's officially banned from food and can only have clear liquids (Pedialyte) from here on out. Luckily he drank almost 130 ML of unflavored Pedialyte with some protest...but, still, he drank it! Last time we were here he acted like we were trying to kill him by feeding him that stuff. We ended up melting popsicles to get him to drink it. So far so good!

Here is where we're at:

Cincinnati Children's Hospital
Room: 38
Location: Building A - South

We can get e-cards again here -
https://secure.cchmc.org/gbl_ecard/select.asp

December 08, 2007

1 more day!

Holy cow!!! Just 1 more day until "closure"...isn't that the perfect word for it?

We arrived in Cincinnati last night and spent most of today hanging out with Michael M's family. It was GREAT. This is the other family that was here having the same surgery as we were on September 24th. This time, they had closure a week before us so we got the scoop on it all. Oh my goodness how these boys have changed since September!

Last time we saw Michael he was sitting and doing a sort of sit-crawl. Now he's crawling all over the place and pulling himself up on everything. And he's huge! It was so fun to see the boys interact. Ben pulled Michael's hair HARD twice! These two boys have so much in common and have been through so much.



Ben's Grandma Linda and Granddad (Batey) came here tonight and have been spoiling him like crazy. It's great.

We check him into the hospital Sunday morning at 10:00am. He surgery will be some time on Monday, but we don't know when yet. He'll stay in the hospital 3-5 days past surgery and then we're to stay in the area for 2-days after discharge. We're anxious, of course, but we're excited, too. We know it's going to be a long week. We so badly want everything to go perfectly for Ben. Cross your fingers!

December 06, 2007

How to diaper Ben

Just to give everyone an idea of why we are so excited for this next surgery, we're going to share with you our nightly diaper routine. So, hold on to your hats!

Step 1 - adhesive

So, first things first you gotta make sure that bags stays on good and tight. You take the Hollister Flextend barrier (top left) and attach the Convatec SUR-FIT Natura wafer (top right) to it.


Now draw the circles for the stomas on the back of the wafer with the pen. Use the hole punch to start the holes and then cut them out the rest of the way with the little scissors. Now you take the Hollister Adapt barrier ring and form it around both of the holes. It's kinda like really sticky clay and helps stop stuff from leaking under the adhesive wafer.

Step 2 - valve

Now it's time to put the gas release valve on the bag. If you don't have one of these, that bag will blow up like a circus balloon.


First, you have to remove the shiny stuff on the outside of the bag with alcohol or else the valve won't stick. Now you can attach the Osto-EZ-Vent to the Convatec LittleOnes Closed-end pouch. Then you poke a hole through the valve with a pair of scissors.

Step 3 - more adhesive

Gotta seal down those edges of the adhesive wafer OR ELSE. ConvaTec's DuoDerm extra-thin does the trick. But, before you can use it you have to cut it up into Ben-sized pieces.


By the way, your insurance company won't cover this product when you have a colostomy because it's technically a "wound" product. But, it turns out a "wound" is a matter of perspective so just start referring to the "colostomy wound" and the medical supply company should set you up good. Heh heh.

Step 4 - washy washy

None of these products will stick well unless the skin is absolutely, perfectly clean. So, now you need to take some water (or, if you're really into sanitation, saline solution) and wipe off the skin around the stomas. If there is the slightest bit of residue from the bath or from a wet wipe you're in T-R-O-U-B-L-E. (Trouble = poo everywhere at about 2:00 a.m.)


Step 5 - dash and squirt

Sprinkle a little dash of Stoma Powder on Ben's tummy to absorb any liquid that might creep under the adhesive wafer. Squirt a ring of Stoma Paste around each hole to help the wafer stick and to keep out liquid.

Oh, but the opening on the Stoma Paste tube is too big, so you're going to want to squeeze it into a syringe and then use the syringe to apply it to the adhesive wafer.

Step 6 - Puttin' it on

Now to assemble your masterpiece. Stick the barrier on Ben's tummy, seal off the edges with the DuoDerm, sprinkle a few drops of bag deodorizer in the bag, and finally attach the bag to the barrier.


Step 7 - something normal!

A wipe, a diaper, and some diaper cream. You don't really need a picture do you?

Step 8 - Admire your work

Voila!

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Check out the Ts

Cute baby clothes for the little "tough cookies" out there -

http://www.tynietoes.com/

December 05, 2007

Closing shop in 5 days!

My oh my how quickly life changes with a baby. It seems like just yesterday we were in the throws of colostomy-schmolostomy trying to figure out how the heck you care for a baby that poos out the side of his stomach. Ahhh...the memories. Haha.

Ever wonder what the whole colostomy business was about? Well here's the deal. This is what your belly should look like...



See the colon there? It's a fat, lumpy tube that snakes around the outside and kinda forms a square. Well, basically they went in there and cut that tube in half, then sewed the ends into holes through the belly. Looks like this...




And that's pretty much what's going on with Ben's tummy. There are two little round holes that we cover with a colostomy bag. We were totally freaked out by them at first, of course. We never expected in a million years we would see our baby's colon...or anyone's colon for that matter! But, there it was...poking through a couple of holes, called stomas, in the side of his tummy. And, just to up the freak-out factor, they bleed when they're touched. Fun times!

Well, wouldn't you know it we kinda got used to them after a while. Ben's cousin, Aaron, described them perfectly. He said, "I didn't expect them to look like lips." He's so right. The colon tissue sticking out looks just like what's on the inside of your cheeks. Kinda pink and moist. However, even though Ben is quite possibly the world's cutest baby ever...you do NOT wanna get kissed by those lips!

So, on Monday they'll go back in there and sew those two ends back together again. He'll be admitted to the hospital on Sunday morning for "bowel prep" where they will basically use a tube to pump a bunch of saline solution into those stomas to clean out his colon. Monday's surgery is supposed to take about 2-hours. We're guessing the scar will be a line-shape. He'll be TPN fed after surgery and until they see his colon is working properly. It could take up to three days, so that should be...uhh...interesting. Once things get moving properly we could possibly leave by Friday.

That's the whole kit and kaboodle!

December 04, 2007

Closure Countdown - 6 days!

Only 6 more days until Ben's next surgery. 208 days since Ben's first surgery.

Within minutes of Ben's birth we were told he would need a life-saving operation within the first 48-hours of his life. This surgery would be a colostomy and would provide a way for him to begin eating by mouth and eliminating waste and provide time to schedule the other surgeries he would need to repair his intestines.

On the day after he was born the general surgeon did rounds late in the evening and didn't like what she saw happening to Ben. His tummy was swollen and he fussed when she pressed on it. He was tentatively scheduled for surgery the following day, but when she examined him that night she decided his situation was acute and opted for surgery that very night instead.

At least a dozen people lined up at his isolet to examine him - anesthesiologists, radiology technicians, residents, nurses, and all sorts of people. We signed paper after paper. At about 11:00pm they wheeled him off to surgery. We just stood there in the NICU watching his isolet being pushed down the hallway with a parade of people behind it. It was so indescribably overwhelming.

Our family and friends supported us in the waiting room. At one point we were paged and asked to take a telephone call in the waiting room. It was the anesthesia team wanting to get consent to do a spinal epidural. Of course we consented. They didn't end up doing it, though, and thank god because we've since learned that an epidural is a very bad idea when you have defects in the spinal column.

We all expected to be waiting the duration of the night, so we were shocked when we got a call about 45-minutes later saying that Ben was out of surgery and doing well. When we saw him next he had a breathing tube taped to his mouth and his chest was going up and down in an unnatural way. We were so exhausted. We needed to go home and rest.

That was the longest drive in the world. There is nothing nothing nothing like driving home from the hospital with an empty baby seat. It was crushing. It was excruciating. It was torture.

But, it was good to be home somehow. There are moments in life when you recognize you are on the threshold - you can either keep your sanity or lose it. Walking into our house was one of those moments. We would either become stronger or go insane. We became stronger. Somehow it was like the house was still waiting for Ben...not missing him like the car seat. Ben had moved from the living womb to the mechanical womb of NICU and our home was still waiting for him to be birthed from there. We sat on the floor of Ben's bedroom and somehow managed to smile and laugh. Thank god for our friends and family.

In 6 more days we will finish what we started 208 days ago.

December 03, 2007

Countdown to closure - ONE WEEK!

Oh yeah...

ONE WEEK until surgery! Can you believe it? In just one more week Ben will be having the final surgery to repair his intestines. It's officially the last surgery on our schedule...heck, it's possible this will be his last surgery ever.

It's kinda weird to be excited for surgery, isn't it? Yeah.

Vacations are good

You know how when you're sick you don't really realize how sick you were until you start feeling better? Yeah.

This weekend was SO fun and boy did we ever need some fun around here!

We started off by making a rule that for the duration of our vacation we would be pretending there was no medical cuckoobananas or insurance junk going on. Good rule.

We headed about 20-minutes north of our home to Lake Geneva, WI and checked into a suite there just in time for the snow to hit. We spent the weekend eating whatever we could get the local places to deliver...so, mostly a lot of junk. The best part, by far, was taking Benjamin in the pool. He LOVED it. He just screamed with delight while kicking and slapping the water.

This morning Ben woke up in the best mood of all time. He's been laughing and cooing all morning. Our theory is he's just so excited we went on a trip and somehow he didn't get poked a prodded by doctors. Ha!

December 01, 2007

Packing bags and NOT going to the hospital!

Today we decided on a whim to book at room at a nearby resort. We've spent the morning packing small bags to bring and looking forward to spending some time by a fireplace and in a hot tub. Ben and his mom have been ready to go for a while, of course, and have been patiently (well, okay, maybe not that patiently) waiting for the papa to get ready to go.

In the midst of his packing, Ben's dad suddenly exclaimed, "We're packing and we're NOT going to the hospital!!!"

So true! We've packed to go to the hospital 3 or 4 times. This is the first time we've packed for just pure pleasure. Fun? What's that?

So, we're taking a little vacation. A vacation from the computer and the endless researching of medical conditions and health insurance. A vacation from the mail and the endless bills. A vacation from our home and all the little to-dos in it that nag at the mind.

We're packing and we're NOT going to the hospital!!!!!!!

But then again, we're packing a bag entirely full of medical supplies. We're packing a 4-inch binder full of Ben's medical records. We're packing suitcases we never really unpacked since the day we left for the hospital for delivery. So, in a way, we're always packing for the hospital.

But we're going on vacation! So there!