Our Unexpected Week at CHOP is Coming to an End Soon...

Despite this surprising turn in Lilly's healing from her last surgery and this disruptive week away from home to have an additional surgery, we are grateful for the ways things have worked smoothly and the things we were able to do.

After our pre op day on Monday when we learned Lilly's surgery would be on Wednesday, we headed north to Grammy's house to spend the intervening day with cousins Peter, Naomi, and Levi.  That's always good medicine.  AUntie Em graciously included Lilly in their homeschool day on Tuesday--and we were able to download Lilly's math homework from her school to work on while they were doing their math segment of their homeschool day.  Lilly also got to practice her flute alongside Auntie Em, who also plays the flute.  This week also just happened to be Peter's birthday week, so we were blessed to be able to celebrate his birthday--LIlly got to join AUnt Judi on a birthday outing for Peter--and a belated birthday outing for Lilly--to dinner and a virtual reality play place where she and Peter got to don VR goggles and have some adventures in another world!  She came home from their evening super excited on Tuesday night, perfect to get her good and tired for a day of anesthesia on Wednesday.

Our show time Wednesday morning was 10am, so we didn't have to rise awfully early, and we timed it well to avoid the traffic the best we could (like DC, there is always some traffic heading into Philly on I-95) and still arrived on time.  Our pre op routine went smoothly, and the highlight for us of all the various folks that come through to introduce themselves before surgery was meeting our anesthesiologist, who--observing LIlly doing some artwork while she waited--mentioned how she loved doing art too, but that her husband is a "real" artist" who draws Bears.  Turns out he is Michael Berenstain, the son of Stan and Jan Berenstain, creator of the Berenstain Bears.  And Michael is now the one who continues to do the writing and drawing of these characters since his mother passed away a few years ago.  That was a cool little tidbit!

Per our standard operating procedure, when it was time for Lilly to go back to the OR, I gowned up and walked back with her rather than her taking the versed pre-med ("giggle juice") per her request.  Normally we walk into the OR, I hold and sing to my anxious girl while they administer some anesthesia via a mask until she's asleep, I lie her on the table and walk out.  Usually it's pretty quick.

This time, however, we had to wait a little while in the OR before they could administer the mask, which only gave LIlly more time to look around the room and get more and more anxious.  She's also getting bigger, and the medical staff was not comfortable with me holding her until she dropped off, so I knelt in front of her while she sat on the table.  Once it was time, it only took verse 1 and part of verse 2 of Amazing Grace before she was asleep and we could lie her down.

Surgery was fairly quick.  Dr. Campbell and Dr. Taylor (the plastic surgeon, who seems like a very nice guy) were both happy with how it went.  Dr. C was able to swap out the clips at the bottom that had become exposed, and bent her lower rod slightly so it was a little farther from her skin.  Dr. Taylor did a muscle flap procedure that pulled her muscle tissue over the rod to give it better coverage from within and will promote better healing this time.  They had originally planned to insert a drain and implement a wound vac to help promote healing as well, but in the end they decided against the wound vac and she came out of the OR with only one drain, which would need to stay in for at least two days.

I had to shift my hope that we might be discharged same day or after a quick overnight, but otherwise I was so pleased to hear how it had gone.

When I got to see LIlly in the rocovery room, she was wide away and actually chipper.  Normally she's quite groggy and pretty grumpy and bossy (I have learned not to take it personally and not to fear that some ugly character traits are developing in her suddenly...it's just the anesthesia).  But this time she was feeling good and pleasant.  That was a nice surprise!

We were blessed to get a private room on 4 South, and have had great nurses as always.  Our Childlife friend, Asia, immediately brought LIlly several craft projects to get her going, and LIlly got to see her favorite nurse, Kelsey, yesterday, when she heard we were here and stopped by to say hi.  She's on our floor today (though she's not our nurse) so we'll get to see her again today.

Last night we had a pretty good sleep--for hospital sleep--with no monitors or pumps beeping.  She got one IV taken out yesterday, and the other should come out today. And this morning I feel giddy that I got to breath a minutes' worth of fresh air as as I ran across the street to pick up my Starbucks mobile order (it's so exciting that a Starbucks opened up right across the street from the front door!) Agenda for today: get some scoli films (X-rays), have her drain removed, and get discharged!  But Shhhh, don't tell Bella, because we didn't want to get her hopes up in case something happened to delay our discharge, she thinks we'll be home Saturday.  If it does work out for us to get home today, I can't wait to see the surprise on her face when we show up.

It's been a hard week to be away--Anna had two AP exams, and last night was Bella's end-of-year strings concert I had really hoped to attend.  But otherwise Tom and our good friends and neighbors are holding things together at home.

We'll be back to CHOP next weekend for a planned VEPTR family reunion--a chance to meet other VEPTR families and patients, to see doctors and nurses in a fun setting, to do crafts, do face painting, play games, and eat good food.  I'm hoping we won't have to come back up to CHOP to have her sutures removed in 3 weeks...they used the non-soluble ones this time in hopes that better healing will result.  Hopefully Dr. Dad will be an adequate person to perform the task of suture removal when it's time.

And we'll be back to CHOP for her next expansion on 25 July.

We are grateful to God for the gift of healing, for talented and knowledgable medical staff, for friends and family lifting us up in prayer, for all those stepping in to help in practical ways.

This morning I was doing my daily Bible reading, and my reading plan has me in the book of Numbers.  As I was reading about all of the required offerings and sacrifices and holy convocations, and considered how the Lord commanded the people not to do any "ordinary work" on those days, it made me ponder the fact that when I am here at CHOP with Lilly, I am unable to do any "ordinary work." While this is frustrating--to have to find subs for all of the fitness classes that I teach each week, to have to line up people to do the work I do at home--feeding, helping, transporting my kids walking my dog, etc.-- and to find it challenging to keep up with daily emails and other administrative work on my computer related to family management and women's ministry, I am choosing to look at these forced times away from ordinary work as a chance to draw near to God. And pray that the way I care for Lilly, the way I deal with these disruptions, the way that I use words or deeds while here at CHOP to encourage other families or medical staff, will somehow touch others and bring the sweet aroma of Christ.

Thanks for your support and your prayers!

An Unexpected Trip to CHOP

There is never a good time for an unexpected medical emergency.  Tomorrow morning LIlly and I will be headed to CHOP to see Dr. Campbell.   No, it's not quite time for Lilly's next VEPTR expansion surgery (that's scheduled for late July).  But one of Lilly's incisions from her revision (rod replacement) and expansion surgery in January has been troublesome this time around and it has finally reached the point where medical intervention is essential to protect her hardware and her health.

The lower part of her left-most incision has been very slow to heal this time around.  When Dr. Flynn (the doc who did her surgery in January since Dr. C's schedule was overbooked due to a leave of absence he had taken late last year) swapped out her lower left rod for a longer portion because she had grown enough to exceed the current rod's expandability, he seated it on her pelvis in a way that caused it to protrude more than it used to.  I noticed it right away once her dressings came off--she just had more of a bulge there than she ever had before.  But her incisions seemed to be healing up nicely and her post op pain had subsided mostly at the same pace as usual.

About 2 months after her surgery, however, once we thought her incisions were finally closed up tight enough to do tub baths again and possibly get her back into her weekly swimming lessons with Bella, one night before bed Lilly asked me to check her incision because it felt "wet" when she had touched it.  I took a look and, sure enough, noticed a tiny little hole opening up on that lower left incision.  We sent pics to CHOP, and they prescribed a round of antibiotics and daily dressing changes.  Tom is an amazing wound care specialist, and he took care of the daily dressing needs on her back while I offered moral support and hugs to Lilly from the front.

Several weeks later, the wound--which really was a pressure ulcer on the incision site from the rod pressing up against her skin from within--was finally beginning to look healed up again.  Again, we were just about to resume tub baths and swimming lessons.

And then this past Friday night Lilly asked me check her incision before bed again.  When I looked I was horrified (though I think I showed great restrain and didn't alarm Lilly!).  What I saw was that the pressure ulcer had again disintegrated, only this time I could clearly see silver hardware exposed. Gulp.  Not good.  At all.  Rather than freaking out (which I was doing inside), I calmly said "let's go downstairs and let Daddy take a look at this."  Tom--always much more calm than me--cleaned the wound and re-dressed it, after taking a few more pictures.

We emailed and texted the pics to CHOP, and by Saturday we knew we were scheduled to come in to see Dr. C Monday morning in clinic, with probable clean out surgery later in the week.

So, yesterday and today I am scrambling to get logistics in place at home so Bella is well cared for while I'm away with minimal impact on Tom's work schedule and Anna's schedule.  Medical emergencies are never convenient, but I woulndn't have chosen this week had it been up to me--Anna has two AP exams this week and Bella has her end-of-year orchestra concert.  My mama's heart wants to be here to support Anna through a stressful week and to cheer Bella on because this child has worked SO hard on her violin this year, seeking exrtra help every Thursday at lunch time from her wonderful strings teacher, Ms. Cordell.  Violin is-in my opinion--one of the hardest instruments to  learn that first year, especially for a child with poorly developed motor skills and visual motor coordination.  (Bella's perseverance on the violin could be a blog post all on its own...may it will be sometime soon!)

Stay tuned, I'll keep things updated as we learn what day her surgery actually will be and what it will entail.

For now, however, we are praising God that other than having a hole in her skin that exposes her hardware, Lilly feels fine!  No signs of infection at all--no fevers, no redness, no drainage, no pain.  That is a huge blessing.  And praise god with us that we have medical insurance that fully covers all of her care and we have the resources to cover the extra travel and hotel expenses are managable, and we have Tom's family not far away when we're at CHOP. And we have fabulous neighbors and friends at home who step in the help care for Bella while I'm away.

Praise the Lord with us and please pray for wisdom for the doctors and speedy healing and return home for Lilly.