Thursday, June 9, 2011

Have at it Lilly!!!

Intermediate Pediatric Recovery Floor (Saturday, June 11-Sunday, June 12)
Well, it's been a bit busy since moving from the PICU to the general recovery floor.  Matt and I traded places yesterday afternoon so that I could be with Barrett.  I drove back to the hospital this morning and spent most of the day with Lilly and Matt.  The three of us rested the majority of the afternoon.  The "fishbowl", as the PICU is called, was sterile and loud and uncomfortable.  Its name comes from the glass doors that open from the main nurses' station into each room.  The 15 foot wide glass doors and three quarter length curtains are all that divide you from the bustle of the floor.  Since Saturday late afternoon, we've settled into the comfort of our own quiet space.

I was deliriously tired Saturday afternoon, so I headed home with Barrett to meet up with my dad.  Before I left, we took pictures of Barrett visiting with Lil'.  As well, I got a few shots of Lilly this afternoon.  I can clearly see a positive change in her face from Saturday to Sunday's pictures.  This evening, when talking with Matt by phone, he said Lilly seemed almost normal.  He wasn't sure if it was all the juice we are letting her drink, but she stayed up from the time I left the hospital to the time I called this evening (four hours).  Lilly spent most of her awake time playing with her Doctor Maria von Trapp Barbie doll, telling stories, and belly laughing.  And . . . the girl is only on Tylenol!  They stopped the oxycodone this morning because it was making her nauseated.  Tylenol?  That's it?  What a rockstar!

Lilly seems to be making a quicker recovery compared to her first surgery.  Matt and I both, though we still find it hard to stomach the sight of the halo, have decided that it is so much better to not have her face fully enclosed as it was with the noninvasive halo.  There is less swelling around her face, and Lilly is able to eat and drink with ease.

Tomorrow, we plan to bring Lil' home from the hospital.  Prior to us leaving, Lilly must be refit with a proper-fitting vest.  There was a screw-up with the orthotist who was responsible for putting the correct vest on her the day of the surgery.  The fellow that has worked with Lilly in the past, and who fit Lilly for the halo four weeks ago, was not able to attend surgery in the OR Thursday morning.  I voiced my concern about him not being there, but he insisted that the orthotist on-call would do a fine job. 

Well, after realizing the vest was way too big for Lilly (so long, in fact, that she can't sit at a 90 degree angle), we urged them to find a smaller size.  Another orthotist, who was on-call this weekend, said he located a box with the name "Lilly Roscoe" labeled on its side.  Inside the box was a smaller vest (it was the vest intended for Lilly's surgery).  Let's just say that the bitch-slapping, hand-waving, oh-no-you-didn't side of me flared up after that discovery was announced.  Once I got a grip, I reminded myself that at least there is another vest and she CAN be refit. 

I'm just going to post pictures now . . . I'm starting to fade.  Thank you, again, for all your love and support!  Tomorrow brings a new day and a new vest.  And, hopefully a bit of rest.

Lilly being visited by an OT and PT.  Thank you Auntie Denny for the doctor Barbie - oh, Doctor Maria that is.

Barrett saying goodbye to Lilly.

Bear was unsure of Lilly's halo.  I'm sure he'll get used to it soon.

Still unsure

Happy fingers

Afternoon wagon ride

Smiling in the courtyard

PICU: First Day of Recovery (Friday, June 10th)
Our morning began at 5:30am after a restless night.  Lilly stirred every one to two hours; sweet Matt got up, from where he attempted to sleep on a blue pleather rocking chair, with Lilly every single time.  Talk about a daddy in love with his little girl.

Lilly hadn't peed since surgery, so her nurse (also named Matt) recommended we put her on the pot early this morn.  Rather than introducing possible bacteria into her bladder with the use of a catheter, we lifted Lilly's bionic body onto a commode and enticed her with a popsicle to do her thing.  After 15 minutes of a rather humorous scene of three adults sweetly suggesting she let it loose, I thought we should either put her hand in a warm cup of water (using my training from 7th grade slumber parties) or pour water back and forth into cups.  We went with the waterfall option and it worked!  Lilly peed within a minute!  Popsicle secured.

After twenty minutes of eating only a quarter of the cherry ice stick, Lilly threw it up.  The same deal happended after four bites of egg several hours later.  Lil' rested for an almost four hour nap after her popsicle run-in and is now resting well in a Radio Flyer wagon.  We pulled her in the wagon to get x-rays this afternoon, and she fell asleep in it on her way back to our room.

There was talk about a bed opening up on the general recovery floor at 3:00pm, but we still have not been cleared by the neurosugery team to leave the PICU.  Matt plans to head home tonight to be with Barrett, so I am hoping we get settled in our new room before too long.

Still sleeping away.  Her lambswool vest keeps her warm; just in time for summer!

This was during Lil's four hour nap.

Lilly's afternoon wagon ride.  Keep on rolling Lil'!

PICU: First Night of Recovery (Thursday, June 9th)
Lilly is sleeping soundly to the rhythmic beeping of her monitored pulse and occasional sharp chirp of a collection of medical devices.  We are in the pediatric intensive care unit this evening; a familiar place with familiar faces, sounds, and routines.  We are getting comfortable in our new space for the night and are pleased with how well Lilly is doing.

Around 5:00pm, we spoke with the lead neurosurgeon and he said the surgery went fantastically.  In fact, he joked that he should, "... just retire right now and end my career on a high note."  He was rather pleased, which translated into Matt and me being relieved and thankful and hopeful that this surgery will be the one to work!  After speaking with the surgeon, we waited an additional hour in the waiting room before we got to see Lilly.

It was like waiting behind the starting line at a race; knowing that when the gun sounded, all of your preparation for the big event would be tested.  I trained my brain over the last four months for this race.  I put it through some major mental challenges: one of the biggest was dealing with the sight of Lilly in the halo. I pictured it, I studied it, I cursed it.  The training was helpful, but the sight of Lilly was just as difficult as I had imagained.  But, her face is free (except for the ring fit with bolts just above her brow) and it still lets Lilly look like Lilly. If I stand above Lil' at a slight angle, it looks like she's wearing a black tennis visor.  Needless to say, I've been standing at that angle most of the evening.  The pin sites are wider in diameter than I thought they would be, and the metal bars and lamb wool vest is larger as well.  We'll get used to it, just as we did with the noninvasive halo.

Within the last three hours, Lilly's asked for water, told me not to hold her hand, waved goodbye to her nurses, called for her "Matt",  and described her halo as "a crib".  She's still sleeping soundly right now and is just on Tylenol for pain.  The nurse's goal for Lilly is to rest and be disturbed as little as possible tonight.  Sounds good to us.

Keep sending healing thoughts and prayers Lilly's way.  I will post pictures of Lilly tomorrow.  Love to you all!

Good night,

Surgery (Thursday, June 9th)
It's almost three o'clock in the afternoon, and Lilly left our arms almost four hours ago. We got a call from the nurse (around 1:00pm) who said Lilly is breathing well and that the first incision has been made. I imagine the doctors took her rib first, which will be used in the fusion of her spine. Once the rib is harvested, the docs will begin the fusion process. In order to keep her little head still and for an easier application of the vest after surgery, the halo has already been fitted.

There is a sense of peace right now knowing that Lilly is braving this and thriving. She's breathing, and our update via the phone was the first confirmation that it will be okay. In this very moment, Lilly is moving through this process, and each tick of time's hand leads her closer to being better.

We've met several people in the waiting room this morning and afternoon that have asked what we're here for. Each family has a story - most of our connection comes from the unspoken understanding that our kids are going through something big. When we tell the families that she is having her spine fused, they wonder why. Many of you may be wondering, too.

Since a very early age, Lilly had strong muscle tone and lacked the ever-common low tone that is typical in people with Down syndrome. At the age of two, when Lilly began using a walker, she (within a two month period of time) began raising up on her toes when walking. At first, we were encouraged to let her continue toe walking because it could potentially develop arch strength. After almost of year of toe walking with her walker and an increase in tone, we knew something needed to be done. We went to the Down syndrome Clinic in Portland and they recommended we have an MRI. The neurologist and all the therapists who evaluated her at the Clinic had never seen a child with DS with such high tone: Lilly was a mystery to them all. After the MRI, it was clear that Lilly had a compressed spinal cord at the C1/C2 region of the spine. Lilly was diagnosed at that time with symptomatic atlantoaxial instability.

So, today is the last day Lilly’s spine will be unstable. In fact, this is the day (as a good friend and my sister-in-law both like to say) that Lilly is kickin' that instability's ass.  Have at it Lil'.  We love you!


  1. Love to you all. Sleep well my sweet Lil'.

  2. I have been praying for all of you. Ya'll are such a strong and inspirational bunch. Sending hugs.

  3. It's quite a rig, Colleen, but I am sure Lilly will wear it with more grace than we can imagine. I am blown away by my own girl's patience with her recovery, and I know Lilly has shown before just how willing she is to be with it all. So glad you are through the surgery, and I hope that by now you are resting in your room! Well wishes for a more restful night, and thank you for keeping us posted. You have all been on my mind today.