Sarah's Running

It has been a while since the last post, but that is because all has been going so well - we almost forgot it all happened.  But there have been a few events, two 5k running races, that Sarah has participated in earlier this month that made us realize the amazing progress she has made.

There were two local benefit 5k road races the first two weekends of June that Sarah ran along with other family members.  She just decided at the last second she wanted to do them.  And given her increased energy levels since recovery and general great health, we said to go for it.  And she did!  She blew me away in the first race running with one of her faster paced friends and ran most the race coming in at 41 minutes (not bad for a 11 year old having never ran).  This is pretty amazing considering 2 months prior she had OHS!  She loved the race and wanted to run home (another 2 miles), but I drew the line there, plus it was a sweltering 85°.

You can see the smile on her face, a bit red, as we all were, was very hot.  She really killed it and caught the eye of many school teachers and friends... "Was that Sarah?!?... Did she just have heart surgery?!?"  Yes, yes she did.  Then she went on to run another 5k the next weekend and did equally as well.

She could not have don this without the great care and expertise of the Boston Children's crew (Dr. Emani, Dr. Lang, and all the excellent nurses)!  This is a testament to how you don't need to let OHS procedure limit your future activities - take care while in recovery, but then get back to life!

Now I need to get running more to keep up with her!!

2 Weeks Ago Today...

... My wife and I were enjoying a sloppy burger, ultra-thin cut onion rings and wanna-be McDonald fries at a local joint near Fenway called Tasty Burger - a converted old gas station with good burgers and canned beer.  Sounds like we just got out of a Sox game, no too early in spring, or a Bruin's game, think they were actually in Montreal that night on the TVs we were gawking at.  No, we were decompressing from an all-day affair of OHS surgery on our daughter Sarah.  She was out and well in the ICU, but would be asleep for a while yet.  Why the hell were we out eating burgers and enjoying a beer - yes we felt the guilt too.  But the nurses in ICU pretty much forced us to get out and get some food, and sanity, in us as it would be a long night and we had hardly eaten since the night before.... You can read about the rest on that night in previous post "Night One - ICU"...

It amazes me that we got through all that - that Sarah got through it with seemingly such ease.  We are proud to say that 2 weeks since the surgery she is thriving.  She is back to full days at school, starting tomorrow (Tuesday) and is chomping at the bit to get back to the rougher activities from which she is currently banned (wrestling, kicking, punching, cart-wheels, tree climbing, etc...).  Patience... you must crawl before you can walk my girl.  Well this girl is running and not looking back.  And that is a testament to the great care she received and BCH, and again we are so thankful.

Another special thanks goes out to all the locals (especially Tracy) for organizing the 'week o' dinners' for us during our first week back acclimating to life again in Danville.  At first we were a little resistant to accept since both Judi and I were still somewhat capable, and heck, Sarah could have cooked for us she was doing so well!  But, it is true, we needed some help and a break - and the end of the day was just when we needed to NOT have to think about dinners.  They were incredible and I have literally put on 5 lbs to show for it, and I am not kidding - so thank all of you for your kindness and generosity to help us out - it was, and is much appreciated.  Problem is, now I won't want to cook...

Sarah had her 11th birthday last Thursday on 4/4 and she was more than well enough to have a couple friends to go out on Friday to get their nails done at Brooke Demer's salon!!  They had a blast and it was a nice alternative to either swimming at Comfort Inn or swimming at Jay Peak - neither of which Sarah could do.  So, she did get her 11th birthday without any real restrictions, which was a nice surprise!

Sarah has a follow up echo with her local (Dartmouth) cardiologist on Friday just to baseline her current valve performance.   We expect consistent results with the day 3 post-op echo, and hope to not have more than one or two echos per year for and long time.  Sarah is working on all her thank you card for all the nice gifts, so this is an unofficial THANK YOU until you get your's via snail mail.  I think she is moving at a snail's pace writing them too - but she is an 11 year old with too much on her mind!

Now, we are focusing on spring/summer, the warmer air and the snow finally almost all gone.  Sarah wants to take winter cover off the boat so they can start playing in that and planning for long summer days on the water.  I thought that sounded like a great idea... Summer here we come!

Home and Doing Great

Well, we have been home for 3 days and we are back to work and school, except of Sarah - she is still taking some R&R.  But, she is doing great.  She has has zero pain since coming home and has not needed any pain medicine - just incredible.  Her sisters were very excited to have her back and we needed to keep them at bay and explain that they can't punch/kick her.  Molly is our wild hare we need to keep our eye on.

Sarah and the girls coloring mustaches on boy-band posters!

Beth Ann (Judi's sister) was able to arrange an earlier flight home and she left on Sunday morning.  Thank you Beth for all your help and taking time off from your life to help us with ours.  The girls were great with her and she kept them in their routine where they need to be.  We can't thank you enough!!

Sarah is doing great with no pain and really not any fatigue.  Her incision is looking great - the surgeons are not only scientists, they are artists too (yeah, Dr. Emani!!).  We are going to try doing a half day of school for Sarah starting on Wednesday since she is feeling great and wants to get back in the routine.  The docs say to definitely pull her out half day even if she is feeling fine.  There is usually a lag effect of several hours until the fatigue catches up to her.  So we will monitor this and play it by ear.

Other than that, luckily there is not much to report.  We had a very quiet Easter, just us, and Katie and I actually took about an hour nap with each other - we missed each other and were both tired.  That was nice.  Mom braided Sarah and Katie's hair last night to create a crazy frizz-jair-doo.  So... life is pretty much back to normal!!

The back...

The front...

Day Five - Leaving Day!!!

Friday, March 29, 2013 - After a great day yesterday, good blood platelet level results and no pain issues, the nurse told us to prepare for discharge later today!  This is excellent news and Sarah has done amazing - Dr. Emani's '#1 Star Patient', as he says.  I am sure, and hope, he refers to all his kids that ways, as they deserve it, and so does Sarah.  Starting to get bags packed up and getting mentally prepared to walk out of the main entrance for the last time.  Sort of bitter sweet, which is weird.  Most people you would think would want to run out of here and not look back; but the level of service and care we have received makes it hard to just walk out.  And we will not.  We do not take for granted, one bit at all, the services we have been so lucky to receive.  I would not say Sarah will be running around school saying how lucky she was to get open-heart surgery, but, we know what this has done for her and her heart.  The people here are amazing and the fact they can go from 6-7 hours of open-heart surgery and 4 days later she is running up and down stairs, bouncing around the hospital, ready to leave, is crazy to me.

Nurse Marci stopped by to confirm all is looking good and pulls her 2 pacing wires.  This did hurt a bit, but mostly felt weird, but it is done.  Sarah perks up a bit once that is done.

Sarah posing with Nurse Marci.

After the pacing wires were pulled, Marci let us know we were gonna get out of here by 2-3pm!!  The nurse gets that discharge stuff in order for us to review and sign.  Sarah is eager to get out, but still not eating much, so we don't want that to keep us later.

By 2 pm all the paperwork is signed/reviewed and we get all our stuff from the hotel.  My mom and dad leave as they have to get their stuff packed to switch hotels (that's another story).  Surprisingly, Emily Singer stops by, a former patient and Boston Children's who had a heart transplant (Dr. Emani was one of the surgeons), to wish Sarah well and exchange stories.  She was very kind to stop by and made Sarah see that having a cool scar is not such a bad thing.  Thank you Emily for stopping by, that was very nice!

Sarah getting a bit restless and ready to go...

And we are outta here!  3 pm and we get our prescription from the in-house CVS and bring all the bags down to the main lobby.  

Sarah waiting in the lobby for Mom to get her pills!

We just decide to all walk to the parking garage, Sarah is up for a walk.  We escape through the giant revolving door one last time, take a quick look behind, and that is it...  We are free. Sarah has a new heart and is outside for the first time in 5 days.  The sun is shining, and the traffic is heavy, but we don't care.  We are going home...

Day 4 - A New Day

What a difference a day makes.  It was said, by many that Day 3, can be a slump day, a depressing day, a day of inactivity or no motivation, a day of just wanting to heal.  And it was, and I am glad.  It did Sarah a world of good to not want to be active, not want to eat (much) and just focus on resting.

She woke up today a new girl.  She was smiling and went for numerous walks even before her 9 a.m blood draw.  She was eating and chomping at the bit to do stuff, like take me on in a game of War (card game).  The game ebbed and flowed for a while, but we never finished due to other activities - but in terms of card balance, I think Sarah took me to the cleaners.

Sarah catching up on her IMs and video chatting with her classmates.

Judi donated some red liquid to one of the research projects that we decided to participate in, that studies congenital heart defects.  I was going to be donating blood platelets later in the afternoon, so the vampire research lady met me down there to tap into my offerings.  While down there, for almost 2 hours, I did successfully yield a pint of pure platelets (that was an experience) and Sarah got to walk down and see me all stuck and tubed with blood all over.  She got a kick out of that.

Nana Dot and Ed flew in from FL today to see Sarah, which was great for them and Sarah.  We took some walks, ate some food, showed them around the Floor and other parts of our new home away from home.  Earlier Dr. Emani stopped by to say how amazed he was at her progress and though it would not be unreasonable for us to head home on Friday!  Hell Yeah!!  We just had to keep her eating as much as possible.

Also, my college roommate, Jamie Petereson, stopped down to visit with some very nice gifts for Sarah.  We chatted a while and went to Boston Beer Works to have dinner and a beer or two.  Thank you Jamie, that was great.

Sarah and Dad taking on Galaga...

When I got back, there was Sarah and Mom in the lobby running around playing with the musical lighted stairs near the main lobby.  Just having a blast being mobile and free - it made me so proud and happy.  We ended the night going to the play area where they have old-school Ms. PacMan and Galaga arcade games for FREE.  No quarters...  That was fun.  It was a great day and if we get out tomorrow, that will be awesome, if not, we are OK with that too.

'Tug' Sighting

There is an old rumor or legend of a mysterious droid, Tug, who roams the lower hallways of the 1st floor near the cafeteria delivering food to patients from another time.  This sounded crazy to me - no way is there a robot roaming the hallways.  I don't really believe in droids, robots, and other such mechanical beings, but some of the hospital employees insist they exist.  So, I had some time since Sarah was sleeping quite a bit, and I went out on a 'droid' hunt equipped with my cell phone hoping to get some evidence of a sighting.

I headed down to the meandering hallways in the basement near the cafeteria, as that is where the majority of the rumored sightings have been reported.  I speak to the security guard, who I have often seen, and thought I'd see what his take on all this was.  "Oh, they exist for sure!  Tug is the main one we see.  He still thinks he is delivering food for patients of the past.  He is a harmless old soul, but can be noisy at times, blowing his steam whistle as he comes and goes."

On his advice, I head to the cafeteria to get a snack, but purposely take a wrong turn to see if I can find anything.  This is sort of a dead end hallway to some old, unused offices.  Sure enough I see and odd moving droid-like being making his way down the hall!  Then I hear the 'whooooot, whoooot...' of his steam whistle - this must be TUG!!  I frantically grab my phone, fumbling to get it in to camera mode - NO, video, come on.. he's getting away.  Got it!  This is the footage I got - not the greatest, but I believe now:

And then, this morning, you would not believe it.  Another one of the reported droid robots was sighted by Judi on our floor!  I hurried out again, looked both ways, nothing.  Went to the first elevator bay, and there it was, not Tug, but an unnamed free-roaming robot.  Again I scramble to get my video and this is what I got:

You be the judge, are they fake or real?  A figment of my imagination, or my phone's imagination?  Is it lack of sleep playing tricks on my head - could be...  We may never know, but I believe!

Day 3 - Get Moving Around Day!

Morning:

I guess my big news is that I got some sleep in the hotel room last night.  After almost 40 hours with limited, interrupted sleep, it was amazing.  One of those sleeps that you don't move and panic somewhat when you do wake, and then try to figure out: a) where you are, and b) what happened, and c) was it a dream?  Well, the answer is:  I am in a hotel in Boston, Sarah got her heart fixed and NO it was real!  So checked texts, Judi chimed in at 5:45 am saying to take my time, all is good (except I know she likely has not slept much now).  Shower, get dressed, and make the morning walk to BCH's grand central.

Sarah, more importantly, is doing great.  She had a good night sleep and is awake when I get in at 6:45 am.  Meds are working well and she is comfortable.  I send Judi home to the the hotel to take a nap and clean up - she is tired.  Sarah and I take a pretty good walk down to the main elevators and back to the nurses station without incident.  She is not wanting to be in the bed, so we switch spots when we get back.  Get some breakfast, but is not hungry, just drinks some grape juice.  Gotta get the eating going better, that is the only piece that is not moving along too great, but not a concern of the docs.

Cool nurse, Sianna (who just got back from
snowboarding at Jay Peak) draining her chest tube.

Dr. Lang (Cardiologist) giving Sarah some information.  Her
heart sounds 'amazing', and he assured her, it is OK to be feeling
cruddy given what she went through on Monday.

Todays planned activities:  Blood work this morning, chest x-rays, removal of chest tube and incision bandage, lots of walking, and more eating!

Thank You Danville

Dear Danville Class,

This is Sarah.  Thank you SO MUCH for all the great cards and letters.  This is a nice way to pass some time because I am in bed a lot.  My heart got fixed but it is a long time to get better, and I am tired a lot.  My Mom and Dad take me on short walks to get my energy back and the hospital is HUGE.  I want to get home soon to I can get back to Danville and school.

Sarah reading all the great get well cards!

Sincerely,
Sarah :)

Afternoon Activities

Since this morning, we have made some progress.  Sarah was really down and not feeling so great.  Just sort of sad and dizzy feeling.  This is typical that on day 3 or 4 to get depressed and withdrawn.  She did get her chest tube pulled out on about 11:30 this morning, and that was not a pleasant experience.  It did hurt quite a bit and she was not happy after that - but it was out, there was hope.  There were some stitches holding the tube in her belly and they just tied those up to suture the whole.  Done.  Sarah said she just wants to sleep now.

After about a half hour she wakes up and says, "Daddy, can you get me some popcorn?  And a grape Popsicle?!  I think I have my appetite back!"  She seemed happy and excited.  Yes!  Popcorn...  where the heck can I get that, not at the cafeteria, but maybe at the gift shop or the CVS in the lobby.  I did find a small bag of Smart Food and a fun brain teasers book.  So we snack on popcorn and do some puzzles.  Then she ordered her lunch and ate a little bit more, but not too much, so the food is progressing slowly.

The day did not have as much up and moving around as we had hoped.  Her poor body has gone through a ton, and this was her recoop day after having such a big progress day yesterday getting out of ICU.  She got a lot of rest between the various required activities and she needs it.  I am on the floor tonight so Judi can catch up on her sleep.  Think the nurse would yell at me if I jumped in the comfy hospital bed with Sarah??  Signing off... Pete

Day 2 - Get on 'The Floor'

Shaking off the ICU:

That is our goal today to get out on the dance floor.  Well, the Floor as it is called - the place where the non-critical patients go (for remainder of recovery), and we are told her room is ready!!

She has progressed great this morning.  Instruments and lines are rapidly vacating her ICU room and the sun is shining in the window - a great day indeed.  She had water and a Popsicle this morning, and just got up out of bed to take a stroll to the bathroom - didn't want to do the bed pan!  She got up quickly and walked very fast to the bathroom, all while the other ICU nurses where hooting, "Yeah, fast recovery girl, you show them surgeons!!  Look at her go!"  That was cool.

Sarah and nurse Cat discussing how to get out of ICU!

Dad with Sarah after a fast walk.  Look at that green shag blanket.
The talk of the ICU is that blanket, Erin...

She is eating some jello, sprite (that is gone) and more water.  Time for a nap after the big bathroom excursion.  Rounds were just completed by the fellows and they love her progress and want to yank the J line (in her neck artery), Foot IV and various hand/wrist IVs in the next hour!

Let's see, so what will that leave her for inserted attachments...?  Well we have the dreaded chest tube still, and a few pacing wires coming out of her chest (somewhere??).  Think that is it.  He pain levels are great, and she feels good, and will rest for a few hours until they kick us out to the FLOOR!!!

On The Floor

We got to the mythical 'Floor' and it is a bit over-rated.  Not as high-end as ICU:  two to a small room, shared bathroom, roommate has numerous visitors streaming in and out all day/night.  Good motivation to get outta here.  Sarah is doing well, been doing a lot of sleeping, but also some walking and more eating in between naps - so great progress.  Pain is in check, on some decent concoctions of meds to keep the chest wound at bay.  Dr. Emani made a guest appearance on the floor to check  on Sarah, and that was nice.  He was saying how her heart sounds just great - ECHO on thursday to base-line the new aortic flow signature.

Dr. 'Ram' giving the new valve the official listen.

Sarah had a nice dinner of mashed potatoes, roll and butter, and vanilla frozen yogurt - all white, all easy on the stomach.  Sarah did some video chatting with Katie and Molly today too, so that was nice for all the girls.  Plan is to have Judi stay with Sarah tonight and I will take off for some Zzzz's at the hotel room later tonight.  Been a while since I've had any sleep - going to be nice.

Night One - ICU

It is about 9 pm on night one in the ICU and we are aiming at a 10 pm lift off for extubation and her to wake up.  We have been anticipating this all day...  Been great to be with her in the ICU, but she is still asleep, so makes it tough.  She has nice color in her face and all her vitals look great.

So, they will cut her propaphal (sp?) feed (sleep meds) at 10 pm and she should wake up within 5-10 minutes.  This is when it will get a bit confusing and scary from here.  We will try to keep her calm, breath and try not to worry about the darn tube in her throat.  Once she is relatively calm and breathing OK, we will work on getting the tube out...

It is midnight and the breathing tube is gone - whew!  That was no fun.  Was about a 2 hours process from the time they cut the sleep meds to getting the tube out.  Took her about 20 minutes to start to wake up - she wan't doing anything, so I got up grabber her had, and just said "Sarah, wake up...".  And she did!  I was shocked, so from there it was a long process to get her awake enough and breathing well enough to work on the breathing tube.  The few minutes of getting that out, was tough, but over with!

I took first shift over night in ICU, and Judi headed back to the hotel to get some real sleep at about 12:45 am.  I made a make-shift bed on the sleeping area of the back of the ICU, and lay down for some unsettled rest.

Good night March 25th, 2013 - a day we will never forget.

Surgery Day

Update 1:

We got up promptly at 5:30 a.m. this morning, showered quick and made our way down to walk the half block to the hospital.  Got checked in at pre-admitting and started to get moved through the 'deli' line.  There are 25 surgeries this morning from knees to hearts to heads - and we are just a number in line.  In the end we get called into our pre-surgery prep room at 6:45 - LONG wait - I was getting a bit ornery and testy  - because we had no update and Sarah was very worried.

Once in our staging area, we were again 1 bed in the open among 10 others with kids all getting prepped.  This scared Sarah even more.  I mean come on, can we have a little privacy!!  Jeez...  So I get the nurse to pull those drape things to close us in.  I explained, that unlike you other clients, mine is very worried, scared and not one for baring her all in front of all these other kids/parents.  Judi and I were starting to lose our faith and really felt like retreating...

From there it got much better.  The real nurses and anesthesiologists WITH bedside manner started to come in and do vitals and talk.  These were good people and not cattle herders like our beginning of the morning experience.  They are very kind to Sarah, understand she is scared and talk gently in a language she can understand.  They explain everything to us and give Sarah some magic pink medicine that essentially makes her loopy/drunk.  Within 10 minutes she is a new girl - laying back, chatting, smiling, relaxes, and not caring - which gives us a HUGE relief.  From there, were give her a hug and kiss, and they wheel her down the long white corridor.  She goes straight, we take a right to the very nice waiting room for 6 hours of, well, waiting...

Update 2:

They are in the midst the the real work - the valve repair procedure.  This may take several hours.  Judi and I keep busy by going to get our photo ID badges that we will need for the week.  Then we run back to the Autumn House to get the rest of our bags/clothes from there.  So now we have everything in the hotel right next to the hospital.  Starting to get anxious as they have been repairing for a few hours now, and I just want word that the valve is fixed and they are closing up surgery...  This is the hard part.  Maybe we will run up to the parking garage and get the rest of Sarah's gifts to bring up to the ICU for when she gets out of surgery.  Sitting with an idle mind is no good...

Update 3:

I am breathing, composed (well a bit more so), and Sarah is out of surgery and soundly sleeping in the ICU. The surgery was a success, but a challenging one at that.  They did succeed in repairing her valve and did not have to resort to plan B (replacement).  It did take two attempts to repair:  first a bicuspid augmentation which was working nicely until the test drove it hard; second they created a tricuspid valve by cutting a flap and augmenting with some pericardium (the sack the heart lives in) - this worked well.  Dr. Emani gave us a thorough debriefing (complete with white-board diagrams) of the procedure and assured us she was doing great.  

The repair work diagram.

After about an hour we finally got to see her in the ICU - which was a tough sight at first.  Just a lot of tubes and wires as we were warned.  But they are all doing a job.  Her bleeding is minimal, and her heart is doing great.  Schedule from here is to let her rest until about 10pm from there we will go for the extubation (remove breathing tube).  This she needs to be awake for and will be a bit of a not so fun experience for all.  But we'll get 'er done!

So, if all goes well, it will be midnight and she will be awake and we'll be partying!!

Boston Pilgrimage

It is 9:15 pm the night before the surgery and we are in Boston, in a hotel for the night.  Our original housing option just didn't work so well - we'll leave it at that.

What a day!!  Got all packed and did some shopping at the outlets in Tilton, NH, but I didn't really lose my shirt on all the loot we got because it was all like 40% off - so think how much money I saved.  Doesn't matter - Sarah got some cool stuff and she was psyched!

We got to our patient housing, the House on Autumn, and it was more like a dorm than a hotel, was noisy (lots of babies) and just was not comfortable.  Sarah was not comfortable - so we went to dinner at Bertouchies and parked the car for the week in the Hospital garage.

At dinner, we ordered WAY too much and Sarah ate like a queen.  Funny, it is all patients and families and medical staff.  All was good, but we got looking at hotels on my phone and Sarah found a gem of a place, Longwood Inn, right next to the hospital.  Real rooms with private bathrooms, and Sarah said, "Dad, please can we stay there?!?!?!"  Yes.  So we finish up, walk up to the hotel, get a room and I walk to our other housing to retrieve some belongings for the night.  So we have an extra room for the week...

Sarah and Dad eating dinner.

Sarah post-shower scrub-down doing some chrome booking!

Sarah is all showered, 'scrubbed' down with her special soap/scrub and ready for bed.

Pre-Op Day Complete!

Yesterday we had Sarah's pre-op day.  This is the day where you get all the pre-surgery logistics taken care of such as:  sign consent forms, various tests and meet with doctors.  This was a whirlwind day but went like clock-work with very little waiting around, which often can be the killer.  I apologize for the verbose entry, but I was trying to recount everything that happened, and this is how it came out:

The day started with an hour and fifteen minute drive from our Spring Hill Suites in N. Andover to Boston Children's - basically bumper-to-bumper the whole way - but we expected that.  We arrive at the Cardiac Pre-Op clinic 10 mins early, however we inadvertently missed our first stop at Admitting - off to a great start.  So from here the following events took place at a very rapid pace:

• Pre-op Check-in:  Check in at pre-op, sign a few patient info forms;
• Vitals:  First step was height, weight, vitals, and quick EKG;
• Surgical Consents:  First meeting with surgical fellow (visiting from UK) who works with Dr. Emani.  This meeting was to basically go over the reason for the surgery, the benefits and risks.  He got into some detail about the process, but I used some awkward gestures and words to keep him more vague when he got into the scary stuff.  We discussed tubes and wires, all of which seemed to be Sarah's biggest concern, but we put some of those fears to rest.  In the end, Judi and I signed the consent forms...
• Anesthesia Consents:  Next... Anesthesiology fellow comes in to discuss meds.  She will get all sorts of good stuff, and she was good to make Sarah comfortable that she will drink some not-so-good pink medicine that will set her off to be quite loopy and carefree.  Then on to the inhale-able stuff that will put her out - pick a flavored mask - Sarah took peppermint.  Again we signed consents;
• Cardiologist Meeting:  Third meeting was her Cardiologist Dr. Lang.  He is quite a funny/goofy guy which is a compliment i believe - he has a way of make this all seem like not such a big deal.  And for them, it is not, and he exudes confidence and a sense of ease with our procedure for Sarah.  He has ties to the northeastern VT which gives us some common ground for banter.  He confirms our plan is on target and we hope for 10 good years out of the repair.  He also confirms, when he asks where we are staying (the House on Autumn), that it should suffice... Uh,.. what?  I say, yeah it was $30/night...  He confirms, you get what you pay for.  Good lord, can't wait to see this place!
• Chest X-Rays:  Down to radiology for chest x-rays - this goes quick with a very Boston nurse who keeps calling Sarah 'Lovey', while chomping her gum.  You know the type - all business.
• ECHO:  Now down to the ECHO lab to get an thorough heart ECHO - this one takes an hour.  High-tech 3D ECHO, and Sarah watch's 20 year old movie (staring a you Cuba Gooding Jr. in 'Snow Dog' - must see) on VHS.  Yes, Sarah, it is an old rectangular DVD, don't worry...
• Blood Work 1:  Next off to the dreaded blood lab!  This is scary part for Sarah.  She is supposed to get numbing patches on her arms to numb the needle poke.  In our rush around, pre-op nursed forgot these!!  Blood lab is like crazy-town, and they don't care much about comfort - just want their blood.  I convince Sarah we are here, lets just do it - then with lack off popping obvious veins, nurse sends us up to pre-op to get magic numbing patches...
• Nurse's Exam:  Back to pre-op, get patches.  These take 20 mins, so we do the nurses evaluation, like a physical.  She goes over Sarah's current health, confirms her little cough is not in the lungs, x-rays looked great, and she has a clean bill of health.  She give us our own surgical 'scrub' soap thing that we need to scrub her whole body with the night before, post shower.  Other direction, no eating after midnight, nothing in a.m., not even water... Don't get dirty, don't roll in mud, wear clean jammies...  Please arrive at 6 a.m. for admitting and surgery - good morning!!!
• Blood Work 2:  Round two at blood lab.  They whisk us back quickly and investigate both arms, Sarah sits on my lap.  Rip off the patches, tie up her left arm and poke - NO PAIN - she didn't feel it at all.  She is exstatic!!!  We conquered the blood draw, this she feels she can take whatever they throw at her now.
• Reasearch Consents:  Dr. Emani is not available yet, so Janice takes us off to see if we want to take part in a research study.  Good greif - really?!  We sit in a room and listen to her spiel   Note, this is a research institution, without live real research, they will not be able to improve their congenital heart defect knowledge.  We agree to participate, because we know Sarah's surgery will be successful due to others who have helped in the past.  This just involves them getting some blood from Mom and Dad, and Sarah (post-op), for use in genetic studies.  Ok, just tell me where to sign, I want to meet with the surgeon and be gone!
• Surgeon Meeting:  20 more minutes waiting in the pre-op waiting room... Promises he will be here soon.  We drink water as we are all dehydrated, chomp on some granola bars, have not eaten.  Then Dr. Emani walks in - my eyes light up - yes, he is real!  He is in a hurry, still in his scrubs, just coming off a 'case'.  He apologizes for the waiting around, and I'm like you are fixing hearts, no apologies necessary.  This is a guy I have been researching for months so sort of like meeting a rock-star.  This guy is amazing what he does, and he will work his magic on Sarah on Monday.  He takes time to discuss all the details and the plan B (2 replacement options) if plan A (repair) is not effective.  He says 90% that the repair will work, and we are hoping to be one of the 9 out of 10!  He has great bed-side manner, and talks to Sarah and highlights the positives, how he will work out a deal with her after surgery to make sure she has less chores.  And he demands she needs to be getting up and around and playing video games on day 2... He is funny, kind, incredibly talented and we are so fortunate to have him performing Sarah's surgery.
• Exit:  We check back in at pre-op, the place is empty, we are the only ones around, it is 3:05 pm, and we are done.  

We are famished...  We hit the Bertouchies across from the parking garage get some pizza and salad to-go and start battling our way through traffic to get home.  Sarah is famished, and she eats half the pizza and the whole salad and a roll.  She is happy to be going home, but is also a bit more at ease with what will take place on Monday.  Judi and I feel content with the procedure and what Sarah and we will have to endure.  Boston Children's is an amazing place and we look forward to getting Monday behind us and a week of healing and hopefully some fun during our stay in Boston!

Sarah and Mom as we escape from a long day!

If you want near-realtime updates on Monday, I will do my best to 'tweet' updates and you can read them on Twitter by following @pmcalenney - this will ease the number of phone calls!  Thank you all for your prayers, wishes, offers to help, and concerns.  We will be in touch Monday afternoon.

-Pete

5 Days..., More Snow

With 10.5 inches of new snow this morning, I am reminded that 'Spring' is just mocking us.  However, for the longevity of ski season, this is great for the local mountains.  Bad for me, as I did not get to go skiing today due to work - again, Spring mocking me!!

With 5 days remaining, we have our game faces on and focused on the task at hand.  We, especially Sarah, need to stay healthy and come in Friday with clean bill of health on pre-op day.  Pre-op nurse Megan called yesterday to do a sort of pre-op pre-call - just to fill us in on what will happen and that for Sarah they will try to make it a positive experience showing he all the cool things she will get to do.  Once out of ICU, bring your own DVDs, each bed has its own DVD/TV, plus room service with a full menu, and plenty of other activities (other than surgery...).

We had a great last weekend with a good day of skiing on Saturday and finished painting (the stripes!) Sarah and Katie's room on Sunday.

We are ready for a full day of poking/prodding, tests, meetings, signing consent forms and the like on Friday, but will be staying the night at our new favorite hotel, Spring Hill Suites just outside of Boston, on Thursday night to make the Friday commute into Boston a little less stressful.  That way Sarah can get a good swim in the hotel pool too!  We will update after Friday's pre-op and see what Monday has in store!!!

-Pete

10 Days...

As we enter our last 'normal' weekend before the surgery, I am feeling anxious and excited to get this over with.  Sarah is in good health (and good spirits) but there is a lot of sickness floating around as spring encroaches.  We are being diligent to keep her clean and healthy - any sickness could postpone the surgery, and that would cause logistical issue plus mental stress resetting the time clock.

We meet with Danville school this coming Monday to discuss Sarah's leave of absence (medical 504) from school and the tutoring routine.  Everyone at the school has been great and so helpful in this situation - may thanks to them for their support!  Sarah has been working extra hard to keep up on her math and spelling and should be in fine shape to be on 'light duty' for a month.  I suspect the month of April may involve me working a lot of math problems while laying with her in bed - just fine by me!

Next Saturday, Judi's sister Beth Ann comes into town from sunny California to watch over Katie and Molly while we are gone - YEAH BETH!!  That is a huge help and we cannot express our thanks enough for her taking a week out of her life (note, she literally just moved from Seattle to California) to help with ours.  Katie and Molly are very excited for their aunt to be at the helm for a week (scheming what they can get away with)!!

We have pre-op day in Boston on Friday 3/22 and then we leave for the surgery on Sunday 3/24.

-Pete

3 Weeks - Getting Ready!

Well, we are 3 weeks out from Sarah's surgery... time sure has moved fast.  Seems like all our logistical ducks are in a row, and we just have to get this over with and done.  Due to a scheduling issue, the surgery date was moved from Tuesday March 26th to Monday March 25th - normally this would be no problem, but we have a full day of pre-op events that need to happen the day before the surgery (and we live over 3 hours away).  So now, we have to go down (Sarah and I) on Friday March 22nd for pre-op hazing  and come back, then go back down again on Sunday - just a pain.  Apparently the surgeon has a board meeting and this just happens - minor bump in the road, but we'll deal with it.

Not much else going on but doing a lot of skiing as the weather cooperates.  Sarah and her sisters have done great with that and really enjoy it.  We just painted Sarah and Katie's room which was long overdue.  Since they share a room, we had some work done to take advantage of unused space with some built-ins, and has been in need of fresh paint and new look.  Here are some pics of Sarah helping out and the end result:

Sarah hard at work making the green!

Looking at Sarah's side of the room.

We will update this more often and the time approaches and thank you everyone for the offers of support and help.  We truly appreciate it!