Friday, June 29, 2012

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.

Thursday, June 28, 2012

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.

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,

Wednesday, June 27, 2012

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,

Tuesday, June 26, 2012


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.

Monday, June 25, 2012

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.