One more thing...

Like Bill, I said screw it and had a good old cry when Stan handed his precious gift to our girl at dinner. 

He had made this wooden bowl for her from a 148-year old special tree that has since been replanted from the tree's own grafts. 

The bowl is absolutely beautiful just like our girl (of course I am biased.) 

May her life be as remarkable as the tree's life and may she give joy to as many people as the tree has.

She has been such an inspiration to us already, and has taught us so much; we are forever grateful for her gift.

The bowl's inscription reads: Sophia's Big Adventure Boston June 2012. May she have many more adventures in years to come.

Sophia with her special bowl  from Stan and Alida and heart necklace from Aunt Giana and Uncle Rik

Ende gut, alles gut.

Dr. Bear sticker, neon sea horse, beany cat, swirly monkey, pink bobble blanket, red heart pillow and one sweet tween with a big, happy heart left Boston Children's Hospital on June 29th at 1:30 PM EDT.

She did it! She is no longer heart-broken. Oh, happy day.

We spent most of the morning preparing to leave. One more X-ray, one more weight check, one more round of vital signs, one more chance to hug Dr. Marx, one more opportunity to say "Good-bye" to Dr. Alexander, and Dr. Kovach (the one with the broken toe) and all the patients and parents we befriended along the way.

Sophia gifted her gigantic heart-balloon bouquet to 2-year old Boaz who we met at the Yawkey Family Inn. He had just come to "the floor" today after his open-heart surgery on Wednesday. He didn't feel too good and she thought that it might cheer him up. And it did. He had never seen a balloon that big.

She also gave nurses Marcy and Danielle one of her big origami hearts with a little thank-you note which they loved. And just like that, it was time to go. 

Superman Stan was at the entrance of the hospital to get "kid and kaboodle". We were free to leave. What a relief. Time to exhale. 

All of a sudden I felt really tired even though we had gotten plenty of sleep last night. Sophia was down for the count from 8 PM to 9 AM this morning. It was actually put into Sophia's chart as a medical order not to wake her for vital signs since she was hooked to a monitor anyway. Thank you, Marcy.

Home - at last. Well, almost.

When we arrived at our new home, Pablito warmly welcomed his daughter who was happy to see her Papi. He had spent the last two days at Stan and Alida's trying to get some work done. Somebody is going to have to pay for these medical bills. :)

One wouldn't be able to tell what this girl had just gone through by looking at her. Well, perhaps the dark rings under her eyes may give away some sleepless nights.

We still can't believe that the deed is done. Our child is fixed. She may even be able to play the piano now. Even though she never knew how to do it prior to the surgery. I told you, only the Petrucci girls can appreciate my husband's sense of humor...

While I'm blogging, sweet Alida is fixing dinner. I don't even have the energy to offer my assistance.

How can we ever thank these two and everyone else who helped us through this? It took much more than a village to get us to this point.

And how can we ever show these doctors and nurses our appreciation for what they have done for our daughter? Especially Dr. del Nido, the miracle worker. No wonder people come from every corner of the world to have their children seen by him.

We never even had a chance to say "Good-Bye" to him. He had to leave for a week-long conference of some sort and we missed him when he came to the room on Wednesday before he took off. I almost cried when I heard that. Out of sheer disappointment.

Sophia sent him a sweet note to thank him again and I'm sure he will appreciate that.

I guess that concludes the telenovella of the Petrucci adventures. Thank you, merci, gracias, Dankeschoen, grazie, אַ דאַנק to all of you who faithfully followed our story, sent comments and well wishes, morally, materially, spiritually and otherwise supported us along the way. We couldn't have done it without you.

And Cathy will send a town car (perhaps with Lily in it?) to pick us up from the airport on Sunday. She wants us to end our journey in style.

Much love to all of you from Sophia, Paul and your faithful blogger Rutchie (AKA asterisk, asteroid, estrella, ostrich, and whatever else you can come up with that resembles Astrid.)

P.S.: Her VT was a random occurrence that scared the night nurse more than anybody else. She was deemed healthy by her EP, Dr. Alexander, who BTW competed with Dr. Marx for the "Crazy Doctor Award," according to Sophia.

Wacky is who whacky does - Part II

Just when I was ready to leave the room to get some lunch for us girls, Dr. Dazzle and Dr. Gon Golfing walked in and started their comedy routine. 

You've got to hand it to these two, they can roll with the punches. The Petrucci girls were maybe a tougher crowd than what they are used to but they had us in stitches in no time. Just what the doctor ordered.

Sophia thinks that her dad would be perfectly suited to be a Dr. Gon Golfing. I am not sure if kids other than his daughter would get his jokes, though.

It's been amazing to see how many people sacrifice their personal time and volunteer at the hospital to make the days go by faster for the kids.

Yesterday, we were visited by Joanna who could play many unusual instruments to entertain the patients. She also took some time to instruct Sophia on three more guitar chords. 

Okay, off to lunch now.
A.

Wacky is who wacky does

Last night was one of these nights that we thought we had put behind us.

Despite pleas to let my child sleep through the night, the nurse marched in at 3 AM to take Sophia's temperature orally as part of the routine. Two hours later my daughter woke again. This time to go to the bathroom since she had been given a double dose of Lasix right before bedtime. And at 5:42 AM she had a case of VT.

And that's not VT emulation for you WRQ people out there. It's called ventricular tachycardia. Sophia was in it for 10 beats and before we knew it, the nurse was back in the room to draw blood at 6 AM.

All I could say to the nurse was "Good Luck" as she was attempting to stick a girl that was completely dehydrated after being drained by the medication, hadn't slept more than 6 of her 12 hours, and doesn't like needles even when she is at her best. Three nurses, two attempts and an hour later we had some blood. Unfortunately, it didn't answer any questions.

VT can be caused by a variety of factors one of which is an imbalance of electrolytes. Hence the blood draw. But she was balanced. The EP team didn't really have an answer as to why she would have had that episode and whether it could happen again. Not very comforting since it is a rather serious situation.

Sophia is back on the monitor full time (we are allowed to leave the room for one hour to get some fresh air) and will spend another night in the hospital. 

Mom is going to do some more research online to have my questions ready for the doctors later today.

In addition, we are anxiously awaiting Dr. Marx' response to Sophia's inquiry whether she should be worried about her tongue turning green after spending two hours outdoors yesterday. She was also eating some sorbet.

More later,

A.

Air Gun Fun

The end is near! That didn't come out right. But we can see the rear. End. ICU psychosis usually strikes in the evening. What can I say?

The Electrophysiology fellow who did Sophia's EP test today couldn't believe his luck to experience the interaction between a pre-teen and her QA first hand. His girl is two years old and he is now looking forward to that time in her life. We are glad we could make his day. :)

He even told us stories about his own QA and how she told him that nothing was wrong while his broken toe was sticking out sideways. Obviously, all QAs are EVIL.

Sophia did really well in her test and only skipped a couple of beats at a heart rate of 170. I guess that means that her hopes for the Olympics in 2016 are creamed once and for all but she wasn't really planning on attending anyway.

What else? Dr. Marx stopped by and told my husband that I have been inundating him with emails for a whole year (the story gets better with every iteration). I must have made a lasting impression.

He informed us that Dr. del Nido and Dr. Alexander have come to the mutual decision to forgo the back-up pacemaker for Sophia. YEA! They took Sophia's spunk, my annoyance and Pablito's smarts into the equation and ruled NO.

We will have Boston-trained follow-up care in Seattle to keep an eye on her sinus rhythm. Apparently it has been normal ever since it came back. Most likely the only normal thing about our child.

Here she is after receiving the best care package ever from her favorite teacher Jeri-Su. These two are made from the same mold. :)

I've got my own Nerf gun now! Watch out!

Sophia had a busy day today. In between X-ray, 12-lead EKG, having her weight checked and all of her vital signs, we sneaked out to the Prouty Garden. It had been 10 days since our daughter had seen the sky.

She enjoyed the sun-warmed slides on the playground, watched the birds eat ants and bread crumbs and grabbed some sorbet at the Ice Cream Social event sponsored by Blue Bunny. They donated $5,000 worth of ice cream to the hospital. That's a lot of frozen milk.

Tomorrow Sophia will get another echo done and after that we should be free to leave the hospital. We have been told no later than Friday. Let's keep our fingers crossed.

The step-down unit is actually less restful than the ICU which might explain some of the blogger's mental issues. We are all looking forward to some good quality sleep sometime soon.

Okay, we are off to have dinner with Stan and Alida who have been the most wonderful remote hosts. Pablito will go home with them tonight.

Hasta mañana,
A.

Twisted

We got kicked out of the ICU today! Can you even believe it? The nerve! No more corner suite for us. We are now in the "step-down" unit and share the room with Sara - a darling 6-year old Chinese girl who loves life. And Winnie the Pooh.

Sophia felt great this morning and tried to finish her art project for the ICU doctors, nurse practitioners and registered nurses who tended to her over the last 8 days. At some point she ran out of steam and mom had to glue the origami hearts on which I gladly did. Each heart has a special design and the background is her sinus rhythm with a heart rate from this morning of 105.

As you can see, it took a village to nurse our child back to health. Six doctors, five NPs, 11 RNs and two Child Life specialists. And we didn't even have all of the people on it that stepped in during breaks.

Tomorrow Sophia will have to have the test done to determine if her sinus rhythm is strong and genuine or whether she needs a "back-up" pacemaker. We hope for the former. Then another echo and we should be out of here by Thursday. Or so we hope.

We are in the home-stretch. Or was it the seventh-inning stretch?

The idiomatic logic
That went on in my head
I had a brain
It was insane
Oh they used to laugh at me
When I refused to ride
On all those double decker buses
All because there was no driver on the top

For my husband Paul R Petrucci.

Monkey Business

Sophia maintained her sinus rhythm all day and got rewarded with a trip to the ICU "spa" complete with hairdresser sink. She was so tickled to have her locks coiffed by her loving QA. Check it out.

 

But then something really strange happened. Somehow, a pink monkey got into her room and started climbing all over. No monkeys jumping on or around the bed in cardiac ICU! Apparently he hadn't been briefed on the safety measures.

This is called ICU psychosis (which is a real condition) that the QA is suffering from. Apparently.

But THANK YOU to Sammy for making Sophia's day.

Hallelujah

Hallelujah, halleluiah, halleluyah, alleluia, הללו יה, halleluya, halləlûyāh


Have I said it often enough? I feel like putting on Haendel's Messiah which we usually only do on Christmas. But we have something to celebrate.

SOPHIA'S CONDUCTION SYSTEM CAME BACK! I don't know what you ya' all did out there, but it worked!!!

Just when the parents started accepting the fact that our princess would need a pacemaker... 

You may have read that she had a little hick-up last night and it startled her enough that her pulse went up to over 120. At this point her AV node seemed to have been jump-started. At least that's what I would like to think happened.

Dr. Alexander came early this morning and walked in with a thumbs-up. After he did some testing, he high-fived me and was ready to walk out. I wanted to know if it was that easy to satisfy him. So he took some time to explain why he wasn't worried about our little birdie.

He also went into detail about different follow-up scenarios, one of which would have been to implant a pacemaker just for back-up purposes. But he said that Dr. del Nido would vote NO on this one and Dr. Alexander seemed to be okay with that.

I just want to run around and kiss and hug everyone. But I will try not to be weird and embarrass my daughter. Instead I will sit here and radiate.

A.

Evening News

Wow, what an exciting way to end the day! As the QA's descendant already mentioned in her earlier blog entry, Paul and I stepped out to watch "Moonrise Kingdom" by Wes Anderson. What a hoot! We can highly recommend it if you like Wes Anderson movies.

When I returned to the ICU (BTW, Paul just moved to the sleeping suites in the hospital which means that he is even closer), I couldn't get to Sophia's room right away because the night nurse didn't answer her phone.

We have had a couple of emergency situations in other rooms as of late, one of which happened today when most of the floor was cut off to parents who had stepped out. The health of the patients is obviously first priority and everyone else just has to wait. So when the page wasn't answered either, I figured that the nurse was pulled into another room to help out with some urgent matter.

But then I caught sight of this little monitor that was inside the ICU just behind the big swing doors and CICU 10 (Sophia's room) was flashing across. SPO2 low. Hmm, could it be that the urgent matter was going on in our very own room?

The front desk lady walked me through the back entrance so that I could get in and sure enough, there were five people gathered around Sophia's bed.

What happened? Here is the recount. Sophia was getting ready for the night and, with the help of the nurse, did her evening routine. When attempting to get into bed, one of the patient cables must have come loose at the pacemaker box and my child fainted. Luckily there were plenty of people around and she came to right away. The nurses believe that she wasn't completely out. Sophia remembers that she had a dream that involved a fancy ad. But she wasn't in it.

While I was trying to get the details of what went down, I noticed that her pacemaker wasn't pacing. She conducted on her own!!! Well, perhaps her AV node needed a bit of an adrenaline push to get back into shape? We shall find out tomorrow what the specialists have to say about that.

It makes me concur with Dr. del Nido's stand to wait the full 10 days post-op before moving forward with a pacemaker. Plus, Sophia just told me after the episode that she doesn't want a pacemaker. One more reason to make this heart of hers have to pick up the pace.

Reading her blog entry makes me smile. She doesn't know what a Cadillac is because her parents drive a Geo Metro. And before that bicycles. The poor lass.

The only other fun thing she did today (and forgot to mention) was to teach the QA how to master the tango. Señorita (her Spanish teacher at school), whose mother is from Argentina, took it upon herself to instruct her 7th-graders in the intricacies of this dance. And my daughter tried to show me how to do it. Paul videotaped it but I will need to get her permission before I can post it.

She also managed to get two balls up today in her Triflo II and to wiggle the third. Progress that I am allowed to post. Although it's almost impossible to capture the moment.

What do you want? Three balls? Watch this!

Are you satisfied now, QA?

Have a good night, everyone.
A.

Random Update So That You Nervous Peeps Don't Freak

First off, yes, Mrs. Prewitt + Violet, I know you like peeps, but that wasn't what i was talking about. Second, sorry that I don't know how to make the title like the other ones, so you'll all have to suffer until my parents get back from going to watch Moonrise Kingdom at the movie theater, without me. :(
It's Sophia again and i don't really feel like blogging, but I kinda have to. So I'm going to be short and sweet so that you don't all freak. (Hey that rhymed!) So....

What did I do today? Darn, it's kinda hard to think right now when I'm listening to a Harry Potter audio book. But I have to write... so anyway.

This morning I woke up at about seven-ish and went to my chair (AKA the Catilak). I sit pretty much all day in my chair, except when i go for walks or have any other reason to get up. Probably not good for me, but whatever. I was visited by Dr. Marx, my cardiologist here, Mark Alexander (who the QA always calls Mark Anthony, which is funny rather than annoying) who is the pacemaker-specialist-person, and an ICU doctor who I don't know. They all listened to my heart and lungs and talked to me and asked if I had any questions. At least they didn't all ask me my date of birth as everyone did for the first few days. *annoying*

I listened to Harry Potter today, read on my kindle, listened to Fred and George Weasly produce their Fainting Fancies, did origami, told Hermione to stop knitting house elf hats, drew, repeatedly got mad at Umbridge, ate, had to stop listening to Harry many times, and just sat in my chair trying to breath correctly. Mother! (>.<)
Anyway, not really much happened or if it did I can't remember. Doing pretty much the same thing everyday kinda does that to you. Tomorrow my mom will probably blog about something she thought was hilarious or important that I didn't mention, so you can wait for her account. Oh ya, and I walked around, too, but you already know that.

Bye then I guess.



*Important notice for people who can read texting shorthand:*
lol srry 4 my abrupt ending but i kinda dont wanna rite this in the 1st place. maybe ill update u later on somethin else. and srry 4 any shorthand i mite hav missed. ;)

QA

The moment a child calls her mother "Queen of Annoyance" because she said weird things again (this time in front of Dr. del Nido) and beats her 4 to 2 in Connect4, I believe the worst is over. 

We did draw in a game of Checkers but that's a small comfort when one considers that the opponent is a 12-year old patient in the cardiac unit. It's like our friend Kim who played chess with her son while he did his homework and practiced his trumpet during the time it took her to make the next move.

Sophia had a very productive day today. First we were visited by Marc Anthony who is neither Roman nor Puerto Rican. I believe his real name is Dr. Mark Alexander but it's hard to keep them all straight. He specializes in cardiac electrophysiology and talked to us about the different types of pacemakers. 

Paul and I used to work at Physio-Control that's now owned by Medtronic and we are partial to that brand. Another option is a device by Boston Scientific that used to be Guidant and before that CPI (during the Eli Lilly days). We know these guys really well, too. In the end we will go with what's best for Sophia's particular needs.

Dr. Alexander performed a number of tests on our daughter, one of which consisted of disconnecting her from her friend 5388 (AKA the external pacemaker) and she paced at 70. Her heart is strong, her ventricle is pumping away better than ever but the atrium and ventricle still don't want to talk to each other. 

How does this even work? So many questions and who can remember the answers? We should tape-record these guys.

The second visitor was Dr. del Nido (which I adore and Paul is okay with that). He marked the spots on her pillow where he operated, explained what he did to make her heart better and then wrote a little note and signed it. Sophia was happy.

Dr. Alexander wants to make a decision on Monday regarding the pacemaker, Dr. del Nido would like to wait a bit longer. They usually give the patient 7-10 days post-op to see if the conduction system recovers but Dr. Alexander is pretty certain that Sophia will need a pacemaker. 

And even Dr. del Nido cautioned us to not get too excited even if her conduction were to come back because they would need to make sure it is genuine and robust (i.e. can follow an increased demand).

Apparently, there are cells around the AV node that can conduct electric impulses and make the heart beat. Isn't Mother Nature amazing? Our engine has a built-in back-up system! It's not as reliable as the AV node but it keeps the patient alive if the pacemaker fails. 

My husband will sleep much better tonight as he has been obsessing over how easy it would be to drop her portable pacer or to disconnect these very thin wires from the patient cable.

Next up, the physical therapist. She worked with Sophia on exercises to straighten her back and to stretch her chest muscles. She also suggested some breathing exercises and will be back on Monday to check on the progress.

After her walk around the unit, Sophia settled into her chair with her Kindle and the parents decided to give her some alone time. Aren't we considerate?

We used the opportunity to leave the hospital and grab some lunch. During our well-deserved espresso break, we received a call from Krissy. She contacted us all the way from Guatemala to see how her friend Sophia is doing. How sweet of her.

Right now Sophia is listening to CD 9 of Harry Potter and the Order of the Phoenix (courtesy of Stan and Alida). She will have to break soon to go for another walk past all these little babies that are swaddled like little burritos.

Have I mentioned that all pregnant nurses who work in our Cardiac ICU get an echo done on their unborn fetus? It comes with the territory.

Vampire Bite?

Sophia refused to be photographed for the blog today (another sign of her speedy recovery) but I was able to snap a picture of a puncture wound on her neck that looks frighteningly familiar.

Could it be that Robert Pattinson paid our daughter a visit??? I guess I will find out...









As Granny O'Grimm would say: "You sleep well, and I'll see you in the morning. With the help of God!"

(One of Sophia's favorite shorts. Check it out at 
http://www.youtube.com/watch?v=cIDv1jJhoxY)

That's me for tonight,
A.

With a little help from my friend

These days we are learning quite a bit about the electric conduction system of the heart in general and our daughter's in particular.

Here is my regurgitation of what I believe her cardiologist said today:

The AV node (which is the size of a bean) relays the electric signal via two branches to the ventricles. Her previous surgeries had already resulted in one of the two branches not working properly before we even arrived here. (I think he said that she had left anterior hemiblock but am not 100% certain.) They could see that in her EKG.

This is due to scar tissue which alters the muscle fiber's ability to transmit the electric signal from the AV node to the ventricle.

The scar tissue is a response of the body to an injury such as open heart surgery. After surgery, the heart muscle swells in the area of the assault (just like your finger does when you cut yourself) which can result in heart block. 

Once the swelling is gone, the conduction system can work again unless the body produced scar tissue. The latter depends on how an individual heals. Some scar more than others.

Since her heart has already formed scar tissue due to injuries from previous surgeries, it is likely that the most recent surgery will also result in scar tissue. If that turns out to be true, we will find out everything we ever wanted to know about modern pacemakers.

Meanwhile, Sophia is getting some help from her new friend. She takes him everywhere she goes. They are quite the team. Sophia gives the marching order and Medtronic 5388 relays the information to the troops. Almost like a married couple.

We will re-group on Monday which is seven days post-op. Up until then, it's walks on the floor of the ICU. Unfortunately, she is not allowed to leave. Bummer. They have a wonderful garden on the first floor that we may not get to see anytime soon.

Giant Iron

While Sophia is watching the Iron Giant, I am trying to recap the last 18 hours or so for our friends and family.

Before turning in for the night, Sophia had to walk one more time (yes, that's a total of three walks in one day) and go to the bathroom. Won't bore you with the details of that one. :)

\

Our Princess complete with beauty mask and Pink Bobble Blanket

Lights were out around 9 PM and the adults actually left the room AND THE HOSPITAL. It was the second time for mom to step into the streets of the city since Sophia's surgery. It was still warm and humid in Boston. Time for the thunderstorm that's been in the forecast...

When I returned to the ICU shortly before Midnight, Sophia was still sound asleep and didn't wake until 2 AM while trying to roll over. 

I helped her get comfortable and she got another 3.5 hours in. It's still a far cry from her usual 12-hour snooze requirement but hospitals aren't known for being very restful places.


The big event of the day was drawing blood to check her hematocrit. She came into the hospital with a "crit" level of 33 and was down to 24 yesterday. 

That's when they started to threaten us with a transfusion. But walking around to get her metabolism kick-started, starting to eat solids and getting hydrated properly as well as some well deserved rest resulted in a miraculous 28 today! Success! And the best part is that there was no nook pain involved.

Lorelei

However, her lungs haven't gotten better yet. They also haven't gotten worse which is good. But we need to continue to work on these breathing exercises. 

She's got the pinwheel down and the bubble blowing but that's not enough to get the phlegm out of her lungs. We also have an anesthesia mask that the nurses use to tap the patient's back in hopes of loosening up what's in there (courtesy of Taylor's mom). And walking around helps, too.

But we are trying to get Sophia to move all three of the balls in her Triflo II device. So far she can get one ball up and the second ball halfway up.

I wonder if Jack can do it...

He probably has strong lungs from playing the trumpet...

Yes, I can!

You are probably waiting for another update. Where to begin? Maybe where I left off last night? 

Almost as soon as I published the last post, the nurses came in to take Sophia for a walk down the hall. She made it as far as the door to her room when all blood drained out of her face and she got so dizzy that they had to abandon the mission. 

Back in bed, she was given oral pain medication which made her heave up her dinner. "That didnae work" as Mac remarked in Chicken Run.

So, we were back to a nauseous child with nothing in her stomach who was still running a fever. And who didn't want to get up anymore.

All throughout the night they were trying to figure out how to help her. She was pumped full of medication in the hope to get her over the hump.

After the morning X-rays, her catheter was pulled, her neck line removed and she was disconnected from her drip. Everybody was excited - except our little bird who was sitting there with hanging wings.

During the morning rounds we were told that her lung had partially collapsed behind her heart. This can be caused by anesthesia, prolonged bed rest with few changes in position and shallow breathing which she had in this very order. There was also some fluid accumulated in the lower part of the left lung which could lead to pneumonia. 

And the attending MD started talking about the possibility of a blood transfusion when Dr. del Nido had decided against it a day earlier. That's about the moment when "yours truly" lost it.

Obviously I haven't been meditating too much lately...

Yes, I can.

When I was done talking to Sophia, we had a deal. We are allowed to hold off on the transfusion for one more day and let her show the team that she can turn the tide on her own.

About five minutes ago we passed the attending MD again on his way home and he was very happy to see our birdie flap her wings around the hallways of the ICU.

After a bumpy morning (she regurgitated her breakfast as soon as she was done chowing it down), she has been holding on to her toast and chicken broth, water, chamomile tea and coconut water. By tomorrow she might be ready for some more substantial food. Let's keep our fingers crossed.

Sophia walked the floor twice today, blew bubbles and her pinwheel and showed the nurse what she can do with the incentive breather. You may notice a white bracelet on Sophia's wrist. It was given to her by Taylor who had her surgery six hours before Sophia (also performed by Dr. del Nido) and was discharged today! She made the most remarkable recovery. Taylor is also the cutest 7-year old and so bubbly and happy - it's contagious.

Her mom and I had been in touch since pre-op and she and Taylor came by today to say goodbye with a balloon and some breathing toys for Sophia and these survivor bracelets for our family. Their hearts are as big as North Carolina which is where they are from.

Sophia is scheduled to have a restful night tonight (no meds, no X-ray, no beeping machines) and we are all looking forward to it.

And where are my bubbles? I need them bad...

Namaste,
A.

48 Hours Post-Op

When we came back from our yummy lunch and much needed break at "Zaftig's Delicatessen" in Brookline (courtesy of Stan), we found Sophia in a new bed. She had meanwhile been moved from her ICU air mattress into a cardiac chair (AKA The Cadillac among the ICU personnel) and then into a bed that can be rolled to the step-down unit on the regular floor once she is ready.

The Cadillac

Heart Balloons

 A short while later we received a phone call that there was a delivery at the front desk. Mom went out and brought back a bouquet of white, pink and red heart balloons (courtesy of Rob and Chelsey) that almost didn't fit through the door. What a pleasant surprise! Sophia's eyes got really big when I walked in but I didn't have the camera ready to capture the Kodak moment.

She was still not feeling too good since the pain medication made her nauseous. But without it she was in a lot of discomfort.

I think that's called a catch 22 which is (as it turns out) a satirical and historical novel by the American author Joseph Heller. Who knew?

 

Scribblenauts

My mission is to get her mind off of her current situation since it only intensifies the pain, the nausea and the frustration. That might sound like Cruella de Vil but it actually helps.

Sophia agreed to play a game on her new pink toy (courtesy of my crazy girlfriends - and I say this with the greatest affection) and later took another nap. Success!




You may have noticed the heart pillow in these pictures. Even though it looks stylish, it is there for a medical reason. Every time Sophia needs to cough, she can (with the help of an adult) push down on it to make it easier to clear her lungs. It takes a bit of oomph to bear down on that red plushness but we were assured by the nurse that we can't hurt Sophia's chest.

Nurse Moira also brought a nifty little device called Incentive Breather that Sophia can blow into and it requires 1200 cc of air per second to move all three balls. She can already move the first one!

Dinner consisted of liquid Oxicodone, half a cup of white sticky rice and a couple of grapes. Her first solid food since Sunday night! And it stayed in. Yet another milestone for our little trooper. We are so proud of her. 

Up next, walking down the hall. :)
  
What a journey it has been already and we continue to be overwhelmed by the support in each and every form that all of you and your extended circle of friends and families keep on bestowing on us. It is simply incredible. Words cannot express our gratitude.

 

Statistics

Check this out. The whole world is rooting for Sophia. Here are the stats from her blog as of 6/20/12 4:30 PM Boston Time.

Pageviews by Countries

United States                      968 Germany                             196 Canada                                71 Nicaragua                             31 Guatemala                             5 Hong Kong                             4 United Kingdom                       3

Obviously, our families and friends in NA and Germany are checking up on her. We also know who the people are in Central America, and the person in Hong Kong but have no idea who is following her journey from the UK. FUN!

From Moira with Love

The drainage tubes are out of her chest. Another big milestone. Sophia is still riding high on Morphine. No liquid Valium after all. We were hoping for that IV-splitter. Could use some of that good stuff right about now... :) 

In Seattle we were kicked out of the room when they pulled the tubes. But nurse Moira figured we can handle it. It wasn't really that bad. Mostly mental because the tubes are fairly far in. 

But now they are out and our Reina can get some well deserved rest.

It's 12 Noon on Wednesday. 42 hours post-op. AMAZING.

Pictures of a brave soldier

Sophia had some more lines removed (including the aterial one) and the room looks a lot less busy thanks to Moira's housecleaning. :)

 

 

And here she is - sitting up on the side of the bed. What an accomplishment! Only 40 hours after being wheeled into the ICU. She even managed to produce a tiny smile.

Mission Accomplished!! The reward is a purple Popsicle.

Sleeping Beauty

Visit from Dr. del Nido

Dr. del Nido just stopped by to check on Sophia. What a sweetheart. Her conduction system is still in heart block. The pacemaker is set to take her atrial signal and to transfer it to the ventricle. If she wants to go higher, it will let her. And if she wants to go lower, it will let her, too. She is calling the shots.

He confirmed that they didn't see anything in the echo that would be cause for concern and the fact that she was able to conduct on her own for almost 24 hours, is a good sign. Time will tell. In the meantime, we will remain in the ICU. 

But he also told us that it's time to take the drainage tubes out. YEA! She will feel so much better without them. And then they will have her sit up and move around a little bit. Perhaps have some food? We shall see. Baby steps.

Hasta luego,
A.

Good Morning from Boston

Sophia had a relatively uneventful night. She experienced emesis (the reflex act of ejecting the contents of the stomach through the mouth, except that there wasn't anything but bile in her stomach) two more times early in the night and had a hard time getting comfortable. But Nurse Keri was able to give her ice chips twice later and she kept them in. Yea!

Her BP is still fluctuating a little bit but it's not staying high which is good. Being on the pacemaker helps regulate that.

Today she will have to make it out of bed to get her circulation going. And that should hopefully also help with draining her chest cavity. She is going to have those tubes in for at least another day. There is still a lot of fluid draining from her insides.

Overall, she is doing remarkable well. One has to keep in mind that she had a major "makeover" done and that her pump has never produced that much output in her entire life.

She made a comment yesterday that her heart is closer to her chest which she said felt weird. But that feeling might be explained by the absence of the goretex layer that now doesn't "cushion" the heart sack anymore. It's hard for us to know what she experiences.

Here is a child who has ALWAYS felt every beat of her heart throughout her entire life. And a normal heart beats about 60-100 times per minute. She finds it extremely strange that her mother can only feel her own pulse rate when doing concentration meditation or working out. I wonder when I lost my awareness and whether she will continue to be in touch with her inner self not having an obstruction any longer.

That's all for now. Mom, reporting from floor 8 South, Cardiac ICU, room 10. :)

Recount of the last 24 hours

Just about 26 hours ago is when our little angel came out of the OR. We met with Dr. del Nido who told us about the wonderful things he had done for our child. He also mentioned that she was on her way to the ICU and that we should be able to see her within 30-45 minutes.

When we still hadn't seen her almost 2 hours later, I knew that they had a hard time getting her stabilized. When we were finally allowed into her room, she had already experienced first degree AV heart block and her systolic blood pressure (BP) had shot up to 160 and then plummeted to 40 in a matter of minutes.

The risk of high blood pressure is that it can make the surgical sutures come undone which causes internal bleeding. Not a good thing. So, the goal was to keep her systolic BP in the 80s or 90s. Easier said than done.

Nurse Keri struggled until midnight (about 6 hours after Sophia was admitted to the ICU) with her BP to make it stop swinging. When it got too high, she administered more Niprid; when it got too low, she increased the saline solution drip. The decision was finally reached to stop the Niprid which worked out initially but then her BP would stay really low and more liquids were required to bring it back up. Then more Lasix to drain her of all the liquids. More visits from the fellow on duty. A delicate dance throughout most of the night.

Sophia was also on Dex to stay sedated but she wasn't really totally out. Once in a while she would struggle to try and sit up and wave her arms around. That's the reason why her arms were tied to the bed, apparently.

Paul went back to the house at 11 PM. I finally hit the snooze button at 2 AM but got woken up an hour later because Sophia had started to "talk." Anybody who ever was on a ventilator knows that it's impossible to talk but she was given a pen and a piece of paper to write down her thoughts. Nurse Keri is brilliant!

Sophia was still on a Morphine drip and between her demand "I want water" when she couldn't even swallow her own spit, and her confusion on "why am I in the ICU when I first woke up at Yawkee Family Inn" it became apparent that the "kicking and yelling in my dreams" was drug induced.

I was pretty impressed with Nurse Keri's ability to decipher the handwriting of a lefty who is so heavily medicated.

The thought occurred to me that it must be incredibly frustrating for a patient who either can't write yet or doesn't speak the language of the caretaker to make him/herself understood.

Room with a View

The View

 
Around 4:30 AM I tried it again and got another hour of sleep in. YEA. The X-ray lady wanted to get a good picture of Sophia at 5:30 AM. Our sweet child inquired "Can I at least put some clothes on?" even though she was in a hospital gown and covered with blankets. Perhaps she thought it would be her class picture?

Back to bed at 7 AM and up again for the daily rounds at 8 AM. It turns out that the attending cardiologist knows Dr. Duncan who had performed her first open heart surgery back in 2000. Apparently Duncan used to first be a pediatric cardiac surgery fellow and later staff at Children's Hospital in Boston. Small world.

We also met the clinical nurse Dot who used to work with Brian. Apparently he and his wife liked her pet bunny. This is a small community after all.

At 9 AM my night was finally over and the day nurse Stephanie started pulling wires and turning off medication one by one. Sophia's recovery was going in the right direction! Paul's arrival put a big smile on Sophia's face, and she granted him a hand squeeze.

Around Noon is when she had her little episode. She was just about to be extubated when her heart decided to have everyone stop and pay attention. And that we did! All of a sudden there was a flurry of activity in the room and people were piling in. We stepped out into the hallway to make room.

After she was put on a pacemaker, she stabilized. But she also started to run a fever. Nurse Stephanie learned from the German housewife (that would be me) what a Wadenwickel is. Not sure if the wet cloth wrapped around Sophia's lower legs, the cold room temperature or the medication ended up sapping her body heat or a combo thereof.

Next in line - an echo cardiogram to make sure the operation didn't damage any tissue or that an area was bruised or something had come undone. Now, I have seen many echos in our child's life and I can honestly say that her heart has never looked this beautiful. Her surgeon had done the most amazing job!

Before she could get her tube out, the nurses had to suck out a bunch of phlegm that had accumulated in her lungs. Just when they were in the middle of that business, our cardiologist Dr. Marx stopped by. It also happened to be the time when Sophia decided to throw up a sizeable amount of bile from the depths of her stomach. (They had already removed the stomach line when attempting to get her off the ventilator initially and the bile had nowhere to go but out.)

All of a sudden Dr. Marx was gone. What happened? Apparently it wasn't the first time that he had made a bee line out of the ICU. Looking at a heart in an open chest cavity is one thing but dealing with bodily fluids? Completely different. :)

Sophia finally got her tube out at 4 PM. Complete with mouth wash and tongue scrub. She has been resting ever since.

Tomorrow morning she will be able to eat! Simply amazing.

All better now. Notice the Medtronic 5388 to the left of her foot.

Thanks for all your emails and comments of encouragement and support. You are the best! Sorry that we can't get back to each and every one of you. Be assured that we are all doing well. Sophia has good color, her stats are fine and she is looking forward to a good night's rest.

More from us tomorrow,
The Petrucci Familia