A Whole New Dynamic at CHOP

Where to begin?

We had a wonderful weekend with Tom's family in New Jersey celebrating Easter. Bella got to meet many of her cousins and experience her first taste of a Cantilina Sunday dinner, and seemed to truly enjoy herself. It was fun to watch her slowly take it all in as more and more people arrived to hunt for Easter eggs and enjoy brunch at Grammy's on Saturday as well. And it was, as always, just good to see everyone again!

Lilly had begun to show signs of anxiety over the weekend, knowing that the big day to re-insert her VEPTR rods was quickly approaching. For Lilly, the sweetness of knowing she was going to miss a lot of school nearly outweighed the dread of surgery and hospitalization, but by Saturday night, as we read "Curious George goes to the Hospital" before bed together with Bella (who has had incessant questions about the days to come at the hospital), Lilly began to whimper and express her fears.

Totally founded fears.

The surgery today, Dr. Campbell had warned us, would be just as difficult as her initial VEPTR implant since they had had to remove 2 of her 3 rods due to infection. They planned to reinsert the two and expand the remaining third. So I was feeling nearly equally as anxious as Lilly (maybe even more so...but how can one really compare levels of anxiety?)

It has been just a little over a year since her original VEPTRs had been implanted. That surgery was a doozy and recovery was painful and tough. Since that big surgery, she has had 3 other surgeries and 5 other hospitalizations, none of which have been any fun at all. So who can blame her for feeling a little anxious?

So after our lovely Easter weekend, on Monday morning it was time to get down to business. We packed the car and headed to Philly, where Nana and Pap Pap were waiting (after their Easter festivities with my brothers in Baltimore) to scoop up Jared and Anna and take them back to VA for school to start on Tuesday. Meanwhile, Lilly, Bella, Tom, and I hung around CHOP most of Monday for consults with Dr. Campbell, X-rays, lab work, and a consult with anesthesia prior to Lilly's surgery this morning.

Lilly was the first case of the day today with a 6:15 am show time; she was back in the OR by 7:30am. Around 8:50 we got word that they had just begun to open her up, and by about 11:50 or so we got word they were closing. Dr. Campbell was really happy with the results--good tissue coverage in back, successfully separated scar tissue that had attached her lungs to her rib cage (her lungs had actually been herniataing through her ribs slightly), successful reinsertion of the two VEPTRs and successful lengthening of the 3rd remaining one.

Dr. Campbell has started ujsing a new pain management technique called a "pain ball" which injects a local anesthetic to her VEPTR sites, and that seems to really be taking the edge off of her pain. She has had only one morphine rescue all day long, and a little zofran for nausea. She has really been comfortable all day long, praise the Lord--just thirsty. I know the coming days will likely be hard, but I also know my Lilly is a little trooper, ready for the challenge.

The biggest difference between our experience today and previous surgeries (besides being more knowledgable about what to expect rather than blissfully unaware of just how hard this journey can be) is that we now have sweet little Bella in tow.

Normally, Tom and I are able (thanks to fabulous family members who help with Jared and Anna) to both focus on Lilly and take turns taking a break from the hospital room. This arrangement--with me spending nights with Lilly and Tom being my morning "coffee boy" and bringing Starbucks when he arrives from the Ronald McDonald House in the morning--has become comfortable, even though we'd both rather be at home in our own beds drinking our own coffee.

But now, we are taking turns caring for LIlly and entertaining Bella. We have spent a lot of time in the play room and roaming the hallways and going for walks outside today. I am spending a lot of time answering endless questions about what is happening here with Llly ("who is that? Are they here to help Lilly? Is she still sleeping? Does her back hurt? What are they doing to her now? What is that machine? Will we go home tomorrow? Where is your bed, mama? Who is that person? And that person? And why are they wearing gloves? And what's that noise? What did he say? What did she say? What are you doing? What's daddy doing? Where are you going?" And on...and on...and on...)

I'm sure, for Bella, this is all extremely confusing. We were so thankful to have Tom's sister in law, Wen, here for the day to help take care of Bella while we were focused on Lilly. She was able to help reinforce what we've been telling Bella about the likely length of our stay here (Yesterday, after simply getting x-rays, our first stop for our pre op day, Bella said "OK, are we done now? Can we go home?"). She really has no concept--how could she? We briefly discussed letting her ride back to Grammy's house with Aunt Wen where daddy could come back to get her the following evening,but quickly decided against that plan when she showed a disinclination to even go grab lunch downstairs with Aunt Wen while we waited for word from Dr. Cambpell from the OR. The coming days will be filled with lots of playroom trips, and--hopefully--as Lilly feels better, some playtime together in the hospital room. For Tom, his evenings will no longer be his chance to relax and unwind after stressful days at the hospital, but will be spent trying to communicate with his own child who does not yet speak his language and who can be easily frustrated when Mama is not there to help interpret.

So as I type this update, I am enjoying the stillness of not having to answer constant questions and the white noise of the bubbling water from LIlly's chest tube. Tom and Bella have headed to the Ronald McDonald House in Camden NJ for the night (only one night was available, but they'll take it) and I am praying that Lilly, after resting comfortably pretty much all day long, will sleep well tonight. We shall see.

Stay tuned. And thanks, as always, for reading!