May 24, 2010

Home again, home again

We got back home around midnight last night.  As we pulled into the driveway we talked about how good it feels to get Ben back into his bed.  Wonder if it will ever stop feeling like a major accomplishment, a blessing, an exciting moment to get this boy out of a hospital and into our home. 

He is right as rain now.  He has been off the pain meds for a day and hasn't shown any signs of distress.  Hooray! 

Looking forward to spending the day getting settled back in at home (thank god for shelf-stable, powdered milk!) and enjoying the new summer-y season that crept in while we were away.  If you're looking for us, we'll be on the back deck playing in the wading pool, setting up the screen play-tent from Grandma Linda and Granddad, and assembling the new sandbox birthday present from Grandma D and Grandpa Wuhwuh. 

Home sweet home!

May 21, 2010

Better day

The pain meds seem to be working! Ben hasn't shown ANY problems today.
The preliminary labs came back showing no infection so that's good, too.

May 20, 2010

Leaving anyway

Ben is still having pain, but we got a prescription pain med for him
so we are leaving anyway. We should get the lab results back tomorrow
and hopefully those will be okay and this situation will improve and
soon be a distant memory. We figure if things get worse or for
whatever reason if we need to we can just go back.

Don't know what the deal with this med is, but apparently the hospital
pharmacists usually need over night to prepare it so it was some
special deal to get it in a few hours. We called two other pharmacies
and they didn't even have the ingredients to make it. Whatever it is,
if it ends the screaming it will be worth it.

Ben was rather...resistant to taking it and spit it out. He's had
enough of us asking him to do all this crazy stuff. When we told him
he might have to go get another test if he didn't take it his clamped
mouth flew open. Seems he knew we were serious.

Pleeeeeeeease let this stuff help him!

Unpleasant

Just got done doing a little, simple, stupid lab test that was about
as unpleasant as it could possibly be. Mama was crying right along
with him...guess we all have our breaking points. Ben is really
hurting. Luckily, when he's not hurting he's perfectly fine, happy,
running around.

We are really hoping - and have every reason to believe - this current
problem is just a reaction to all his little body has gone through
this week and will go away on it's own. We are waiting now for a
prescription pain med and hopefully that will help ease things.

Going back to the hospital

Kinda saw that coming, huh?

Ben is still in pain and we are going back over to the hospital to do
some tests and get a prescription for something to relieve the pain.
We will see what the tests turn up and go from there.

Ouchies

We are having a hard time leaving Cincinnati this morning.  Ben is in some pain.  We were told this was normal for a couple of hours after yesterday's tests, but it's still happening this morning and doesn't seem any better.  It's difficult to see him going through this and worrisome that something is wrong.

We are slowly packing up our hotel room and making calls to the doctor's office at the same time.  

May 19, 2010

Done! (for now...or, on to the next)

We are alllll done at the hospital and headed back to the hotel.

Long day with lots of info to process. The VCUG ended with a lot of
drama...Ben was really hollering and they finally gave up. His mama,
being pregnant, couldn't be with him for the test and sat and watched
the whole thing from behind a window. That was a new/different
experience. Under the circumstances Ben was reaaaalllllly good.

So, all-in-all the news is good...we are sort of still in shock
really. We left yesterday's post-op consult with the surgeon being
told it wasn't a matter of if, but how soon a life-altering surgery
would be. And somehow everything turned around today and we left the
clinic appointment with a "watchful waiting" agenda and the very
clear, sweet words "surgery would be WAY too much intervention at this
point."

Wooooohooooooooooo!!!!!!!!

We go back for more tests in 6-months and replan the next steps then.
Meanwhile we keep an eye out for danger signs and live and let live. :)

As Ben's dad said when we were leaving, "So, we're done! ... For now.
Well, on to the next, right?"

Yep.

VCUG

Carnival of tests

We are back at the hospital this morning for a day jam-packed with
tests. Ben had an ultrasound this morning already and now we are back
in the Peruvian Carnival waiting room...well, waiting for his
urodynamics evaluation.

A little wary about how this one will go since the last time we did
this test Ben was maybe 11-months-old...and totally freaked out. His
mom ended up having to sit up on the examining table with him and
breastfeed him for the whole hour to get him to lay still. Ahhhh...the
memories! Ben doesn't use that "pacifier" any longer so hopefullythe
bag full of little presents we have will do the trick.

May 18, 2010

Heading out

After four Popsicles and three juice boxes Ben decided it was time to
leave. But, not before a stop at the gift shop where he got to pick
out any toy...he found a nice Thomas one. He is a bit groggy but seems
comfortable for now. He was complaining a bit for a while there.

Vroooom outta there

Juice

Ben wanted a pic of his pink tongue.

Are they all done?

Ben's first wakeup words were, "Are they all done?"

Done

We met with the surgeon and things went well. Unfortunately things
have not gotten any better in there...there is still some nasty scar
tissue. If tests don't look good tomorrow Ben will almost certainly
need another surgery. :(

It was funny, though, because at one point in the middle of explaining
the non-ideal situation, the surgeon said, "I have to say...you guys
are a little unsettling with how well you are handling all of this.
Usually parents are pretty...shocked...distraught."

Yeah, but they don't obsessively study up like we do...or go in like
the ultimate pessimists expecting the worst worst, so when we get the
medium worst we're not destroyed.

Weird

We've been called back to a consult room already...which is kind of
weird since it's only been a few minutes since they took him.

Out like a light

He's back in surgery now. We got to be with him while they started
anesthesia. He was so so soooo good for it. He didn't fight the mask
at all and fell asleep in mom's arms.

The procedure is scheduled for 50 minutes. So now we wait...

Met the doc

We've met the anesthesiologist and e was very nice. We just met Ben's
surgeon for the first time and had a rather...intense...talk. We
didn't have time to get indepth this morning, but he has reconfirmed
what his nurse said...that he has some reasons for concern.

But, maybe just maybe he will see improvement when he gets in there.
We can hope.

We are now waiting for our turn in the OR. Ben has been pretty
content watching TV and has asked for a drink a couple of times, but
all in all he has been a VERY good little boy (and cute as everyone
has told us).

All dressed up

We've done the anesthesia consent and all the admitting paperwork and
now we are waiting to speak with the surgeon and sign the surgery
consent.

Pre-op

We are waiting in pre-op now...watching Dora on the little TV.

Carnival Hospital

We just arrived at the hospital and have checked in for a blood test.
The waiting area we are in has a Peruvian Carnival theme with a huge
mural on the wall full of little buttons to press that make music and
such. So far it's proved quite the successful distraction from milk.

Headed out

We are headed out to the hospital this morning. Ben has been
sssoooooooo great about the whole no-eating thing...until about 2
minutes ago.

"Mama, I hung-ee."

"Baba, I want milk."

We had a really nice tour of the operating floor last night, so
hopefully that will make things less scary today. They took him
through the whole process and even let him smell all the different
flavors of "sleepy air" available...he was particular to the
strawberry. :)

May 12, 2010

Hospital Itinerary

 We got Benjamin's hospital itinerary yesterday.  Not exactly a vacation itinerary is it?  Well, we gotta do what we gotta do.


Tuesday May 18, 2010
Benjamin should not have any milk, formula or solid food after 245 am.  He can have clear liquid fluids to drink until 645 am, then nothing at all to eat or drink after 645 am.
 
830 am - blood tests - report to the Test Referral Center on A1 near the end of the hall.
 
915 am - report to Same Day Surgery.  Benjamin will be prepared for surgery and you will meet with the anesthesiologist.  Dr. Alam will talk to you briefly after the procedure but the in depth discussion will take place Wed afternoon after he has all of Benjamin's results.  After the procedure, Benjamin will go to the PACU (recovery room).  Once he has been there at least an hour and is well awake, he will be discharged and you will be able to return to your hotel.  He will have a catheter left in his bladder for his testing the next day.  The catheter will be attached to a drainage bag which you will need to empty every several hours. 

 
Wednesday May 19
 
730 am - Benjamin should finish drinking 6-8 ounces of clear fluids in preparation for his ultrasound.
 
830 am - report for kidney ultrasound at Radiology on B1.  Register for both the ultrasound and VCUG at this time but make sure you go to the urodynamics at 1030 before the VCUG is done.
 
1030 am - formal urodynamics - report to the Nephrology/Urology clinic on A1 across from the lab where blood was drawn Tuesday
 
1130 am - VCUG - as soon as the urodynamics is finished, report back to Radiology for the VCUG.  If you have registered earlier, let the desk know you have returned.  Once his testing is complete, the catheter will be removed in Radiology.
 
Lunch - the cafeteria is located on D1
 
130 pm - Urology appointment with Dr. Alam - report to the Nephrology/Urology clinic on A1 across from the lab, the same clinic where urodynamics were done early Wed.
 

May 08, 2010

Birthday party canceled

Looks like we will be continuing our family tradition of cuckobananas on Ben's birthday.  Ben has a fever today, so we are canceling his birthday party tomorrow.

We will admit we weren't thoroughly comfortable with the idea of having Ben in the midst of a large group of people so close to his operating room trip.  But, man.  We were sooooo looking forward to having his birthday party on his birthday.

At least we're not in the ER this time talking about a possible immune deficiency disorder, a bunch of neurosurgery residents hanging around talking about doing a spinal tap, an ER resident making references to an overwhelming infection, etc, etc, etc...yanno...like last time.  Gotta look on the bright side!  ;)

We're sure this will end up being the same old same old...a typical childhood illness or common virus.  But BOOOOO for it being on his birthday!

A little sense of humor

Ben's sense of humor has been developing lately.  His new favorite is "Just kidding!"

Yesterday his dada asked him what he wanted for his birthday and Ben said, "A tree."

"Really?  A tree?", his dad asked.

Ben replied, "Yeah.  With leaves and sticks."

"Okay...uhmmm...a tree."

"Just kidding!

May 06, 2010

Today's ultrasound

We had a Level 2 ultrasound today to do a full anatomy check.
Everything looks good! Two kidneys, fully developed spine, good heart,
and measurements are right on track. Yay!!!!!

We seem to have a modest child here, though. Legs crossed the whole
time! So, we don't know if it's a boy or girl yet. Oh well.

We are supposed to come back in two months for another scan to check
growth since both Ben and Olivia were growth restricted. But like the
doc said maybe we just make small babies..."but the woman in the room
next door had two 6lb babies and now her next is measuring at 9lbs."
Hmmmm...I might prefer growth restriction.

So that's our news. :)