It's Finally Here!

Please see surgery updates on Lilly at the bottom of this post.

Today is surgery day:
On this very early morning, I know that Lilly and her family are on the road to Doernbecher and beginning a day unlike any other.  It's surgery day. . . finally, it's here!  I wanted to quickly share a few darling photos that were taken of Lilly and her family just a few days ago.  Colleen's sister-in-law, Rachel, is amazing and so nicely offered to take a few candid shots of the family.  Here's a sampling of the goodness:

 Oh, I could go on and on with with photos.  They're fabulous, Rachel!














 Lilly also wanted me to show y'all her new hairdo.  She's set and ready to go and is really rockin' the pixie.  Watch your back, Maria von Trapp!  Lilly might just give you a run for your money.

Lilly, I want your new do!  And Colleen, how the heck did you make her headband.  Are you kiddin' me with that!

 

Lilly and her family wanted to send out a thank you for all the support they've been given during the preparation for today.  Please continue to keep Lilly in your thoughts and prayers as she undergoes surgery this morning and recovers in the months ahead.    

                              Sending healing thoughts your way, Lilly.
                                       Your Auntie Kiki loves you!

Surgery Day Update
*Lilly arrived at Dorenbecher  for a 6:15am check-in and surgery prep.  Matt said that Lilly knew something was going on and was extra clingy, but that she did well after the nurse gave her a little "sleepy-time" medicine.
*At 9:00am a nurse called to tell Matt and Colleen that things are going well and that the surgery is underway.
*Around 12:00pm, Lilly has made it through surgery (YIPPEE!!!) and will be in recovery for about an hour.  Colleen said that neurosurgeon said things went better than expected!!!  Colleen and Matt will be able to see her for the first time in just an hour or so.
*Lilly woke up around 3:00pm and has been moved to the Pediatric Intensive Care Unit (PICU). She's presently sipping water and watching cartoons.  She's been reaching out for her parents and is calling out, "Matt!"  Her speech is clearer than they thought it would be at this point and she is saying words and short sentences ("Matt, hold you," "More water," . . . ).  One of the first things she said was, "Out."  She does not like the halo and is fighting it a bit.

*Colleen wrote late last night:
Lilly just woke up from a two hour nap and got a dose of Tylenol and Oxycodone.  She's watching Finding Nemo and had several bites of applesauce before her cocktail of medicine.  She's commenting on her movie and is even laughing at times (even before she took the meds).

I've made our bed - well, I put a thin sheet on the cushion of a window couch and Matt and I are going to attempt to squeeze into bed soon.  I did place Lilly's prayer quilt, which was made by a family at PRIDE that we've known for several years, on our "bed" so there is a bit of comfort and coziness in our room.  Lilly is wrapped in a soft, pink and orange owl-covered blanket that Evie made her.  Right now, things are good.  Another dose of medicine will be given in four hours, or whenever Lilly seems to be in discomfort.  At that point, things will be even better!  We are hoping for a little sleep and expecting to see Lilly to improve hourly.

I've only had one mini-meltdown tonight.  It was when Lilly was asleep - it got to me.  This whole thing seems too big sometimes.  But then, when Lilly woke and ate her applesauce, it felt better.  Each little step is one step closer to Lilly being healed.

First full day after surgery:

*Lilly slept fairly well last night and took a long morning nap.  Lil' ate a good amount of eggs and coffee cake this morning and is continuing to ask for water and juice.  Colleen and Matt propped her up in bed with a pillow and she watched cartoons this morning (she's lovin' that!).  Pain is being managed and Dr. Selden, the neurosurgeon who preformed the surgery, will be in at some point today.  At that time, they should be moved to the general recovery wing.
*The family is enjoying their new room on the recovery wing.  It's a quiet room of their own and they're settling in for the next two days or so.  Lilly is napping quite a bit and each time she wakes, she realizes she's in the halo.  Colleen says it's so hard to watch her rediscover that she has the halo on and is still wanting to be taken "out".  Lilly seems comfortable and feels especially comfortable in Matt's arms.  They've been rocking in a chair and lovin' on each other every chance they get.  Colleen has been a bit concerned by the swelling Lilly has around her face and the fact that there have been a few meals that she's been uninterested in.  The nurse says that both are normal at this point.  While Lilly naps, Colleen and Matt have been able to have quite time together.  They've been reading, playing Scrabble and having good talks.  I'm happy for that.
Sleep tight Lilly.  Love you.

One full day of rest:
*The family slept pretty well last night.  The nurse woke Lilly twice to give her pain-meds (once at about 1:00am and then at about 5:00am).  Other than that, she slept the whole night - as did Matt and Colleen.  She's been able to nap to the sounds of the sea scape channel, and Matt and Colleen have been sitting on the window couch in the sun (an on-going game of Scrabble has helped pass the time).  I spoke with Lilly this morning and asked her what she thought about the eggs she had for breakfast.  She said, "Good."
*Sounds like Lilly and her family were able to rest most of the day.  When I spoke with Colleen this evening she sounded really well rested.  I'm bummed that my conversation with Colleen was cut short tonight (Lilly's dinner arrived and she was in need of another dose of medicine).  She did quickly tell me that an on-call orthotist, neurosurgeon resident, and their awesome nurse helped them dress her incisions for the first time.  She didn't go into detail but did say that the experience was very difficult (I'll spare you the actual word that she used to describe the procedure) and that they will just have to get used to it.  Sounds like Lilly is doing well when they keep up on her medication.  When I called, Lilly and Matt where drawing.  Lilly had just finished with her piece. . . it was a tree, the sun, and a few clouds.  Sounds like my Lilly Girl. . . she loves her art time - especially with her Dada.  If all goes well tonight, it sounds as though they may head home tomorrow.
Heal up Lil'!  Your brother and your family want you home.  We love you, sweet girl.  Night-night.  

Last day in the hospital:
Colleen wrote:

The fourth day in and Lilly is continuing to progress in her healing and acceptance of the halo.  As are we . . . healing from the stress build-up prior to surgery and accepting this new way of living for the next six to eight weeks.  Though we've only been at it for several days now, it seems manageable.  This whole experience is here; we are finally living and breathing it.  But, this challenge will come and go and be a distant memory where our only reminder will be two scars (one three inch long scar running vertically down Lilly's upper neck and a two inch horizontal scar midway up the right side of Lilly's back).  Oh, and Lilly's healing in her cervical spine will be a huge sign of change! The hope is that her spinal cord, without the C1-C2 pressing on it , will regenerate and allow for signals from the brain to the rest of Lilly's body to flow correctly and effortlessly.  Intensive PT and OT will help in getting Lilly's body to heal and work differently.

Lilly met and worked with three PTs at Doernbecher today.  We attempted to get her to stand at her walker, but her balance from the weight of the halo made her uneasy and upset.  So, Matt cradle-carried her to the playroom on our floor and she cooked up a mean breakfast of pizza, pickles, and cookies at the play kitchen.  Tasty!!!  It was a most delectable sight to see Lilly playing.  Though her confidence on her feet is not yet there, it was confidence-boosting to see her interact with toys that are similar to what we have a home.  Look out tiny play kitchen, table-top easel, and doll house - here comes Lilly!

We are still waiting for the on-call orthotist (a real kick-ass guy who helped fit Lilly for her halo several months ago and was able to scrub into the OR on the day of Lilly's surgery).  He even called us this weekend to make sure our questions and concerns were addressed.  What a perfect way to end our stay at Doernbecher: seeing the same orthotist we started with.  As well, we expect a visit from Dr. Selden and his NP today.  They will give us the all-clear to head home if they agree she is ready to depart.  We may try and practice changing Lil's dressings one more time to build a-bit-more confidence in tending to them at home.  Yesterday, we tipped Lilly forward onto her belly, placing her prone on two stacked pillows.  It was at that point, that the orthostist, neurosurgeon, and nurse helped pop open the straps on the halo (of course, she was lying on them).  The back portion of the halo was then lifted off and the incisions were then cleaned.  They both looked healthy.  It was Lilly's crying that made it difficult.  And, then there was the thought that we could misaligne her spine.  Oh, those we my fears - there was limited risk in harming her vertebrae or ribs.  Still, that experience ranks up there as one of the must unpleasant so far.  Moving on . . . .

On a happier note, Lilly spent the entire night off of oxygen and her IV.  At her 12:00am wake up, she said, "Want some water, Mama."  Yes!!!  She had resisted liquids and food most of the day yesterday: mostly scared of swallowing.  Lilly has continued to gain confidence in drinking and eating - take that bowl full of applesauce!!!

Well, we wait comfortably.  Lil's sleeping, the sun is bursting through the clouds, and our game of Scrabble calls.  Thank you all for your love and thoughts, and prayers!!!

*Lilly was just seen by the orthotist and Dr. Selden.  Colleen and Matt cleaned her incisions again, and it sounds like they all rocked it out!!!  Both Colleen and Matt feel much better about  the dressing of the incisions at home.  As well, Doctor Selden said that Lilly will probably have the halo taken off in six weeks due to her age and because the x-rays looked good.  Another set of x-rays will be completed in two weeks as well.  Good news all around.  The best news is that the family will all be home in time for dinner!  Yippee!!!

Lilly's done with the hospital and is excited to be heading home to heal with her family.  Keep up the good work Lilly Girl!!!  Your Aunt Kiki is so proud of you. 

Please feel to email me if you have any questions.  kdhvaughan@gmail.com