Other Weekend Fun!

We celebrated Brian and Dan's birthdays, a little late!  

Lydia and Grandpa ate icecream!  

And then some bugs died with the bug zapper salt gun!

Some Videos....

 

The End!

THANK YOU! $2,645

$2,645

You all are so awesome!  

Thank you for making Team Love4Lydia the best support team for our little girl.  We had so much fun raising money, getting the team together and enjoying the morning yesterday.  

Thanks to all your support, Love4Lydia was the second largest team (we were beat out by 2 people!) and we were the largest fundraisers for CHD awareness.  

From the bottom of our hearts, even our little mended one, THANK YOU!

 

Here are the loud, shaky, and just plain not too good, videos from the Kid's Dash!

Arm Board Distractions

Lydia does not hate her arms boards! 

They frustrate her at times, but she's adjusted really well.  When we take them off she shakes her arms out and moves them around like she's exercising.  Then she starts going through her signs like we're doing drills.  She's limited in what  she can sign with the arm boards on.  Last night when it was time to put them back on she stuck her arms out straight to be helpful.  

I'm very surprised this is going so well...and so very thankful.  We are on day 10 of arm boards and our follow up appointment is on the 24th.  Oh and last night I finally looked at the roof of her mouth and all the tiny white stitches.  From my untrained eye, everything looks good!  I'll let you know what the Doctor thinks next week.

We've been having all sorts of fun, even with the arm boards.  We've been to Macy's, Grandma & Grandpa's, Sam's Club, the farmer's market, Menard's, and many trips to the school playground and the park.  Oh, not to mention playing the trumpet, tending to the garden, watering flowers and countless rides down the driveway. 

My brother, sister-in-law and 3 nieces will be in town this weekend to celebrate birthdays, Mother's Day, and Team Love4Lydia's 5k walk at Arrowhead on Sunday.  We're going to have lots of fun making more memories.   

 

Like nothing ever happened!

We are one day shy of one week post-op and Lydia is doing amazing.  It's almost as if it never happened.  She's adjusted to her arm boards and isn't too cranky while wearing them.  It's frustrating at times if she wants to sign to us or play with certain toys.  Otherwise, she goes about her business. 

Sleeping is difficult.  She can't get comfortable with her arm boards on.  If she has a night nurse she can sleep with one or none and be fine.  When Dan and I are with her we are up all night taking 30 minute cat naps when she allows it.  She tosses and turns and can't get into a deep sleep because we leave the arm boards on since we try to sleep too.  

Last night around 4am I gave up, took the arm boards off, turned her monitors off and snuggled in on the couch with her.  We woke up at opposite ends of the couch and she had flipped around!  At least she was sleeping soundly.  At least I have coffee.  

She really doesn't seem to be in pain now.  Day 1 and 2 were bad, day 3 was okay, day 4 was almost normal.  The first few days she was on regular every 4 hour Tylenol and a dose of oxycodone at night.  Now she's on Tylenol about every 6 to 8 hours.  She has worn her passy valve and her cap for awhile and will be working her way back up to a full day this week.  She's eating her full amount again and we have completely switched to bolus syringes, no pump and feeding bags.  That means she doesn't have to wear the backpack!    

Her surgery follow up appointment is next Wednesday, where we hope to learn that she can ditch the arm boards and brush her teeth.  Oh the breath, poor girl, she needs to brush!

She's my hero!

Lydia got some relaxation meds and was feeling good by the time we said goodbye.   She could hardly hold her head up on the bed when they wheeled her off. Away she went with her puffy bed head bouncing.

Her ear tube was replaced on the left side. The right side looked good.  Her bronchoscopy looked good, just a bit of granulation tissue above trach which will be removed later.  I have pictures if you want to see her airway and trach from the inside! 

Lydia has been wearing her cap all day, which is a huge step towards decannulation.  Dr. Arganbright said we can think about doing a sleep study in 2 to 3 months so that her repair can fully heal.  She also noticed that Lydia's tonsils are big and she'll probably want to take them out to open her airway more. All this puts us at September or October for a sleep study. Guess what folks? That's too late for decannulation this year.  Dammit.  We will most likely have to wait out the winter and deacannulate in the spring.  There is still a slight chance we could fast track it before winter.   More on my feelings about this later...I'm pretty bummed right now.

Everything with the palate repair was textbook and routine! She will be swollen and uncomfortable for awhile, but should bounce back pretty quick.  Her mouth is pretty raw and sensitive so nothing can go in it for at least 2 weeks... maybe this will make her want to drink water! All her stitches are dissolvable.  We just heal up and wait for our follow up visits with ENT and plastic surgery.

We are waiting out the afternoon in a surgical observation unit before we can move to the second floor surgical wing. Lydia came off the vent and was breathing on her own right away so we've skipped over the picu. That's very good news.  She's pretty cranky and has been asleep for the most part.   Her mouth is pretty gnarly and her secretions are bloody due to the drainage.  She's  sleeping the afternoon away on oxycodone, Tylenol, and some breathing treatments to keep her airway from swelling. I'm getting in some serious snuggles.

Away we go!

5:15 am leaving for a 6:00 am arrival at same day surgery.

Lydia's sub mucous cleft palate reconstruction will be Dr. Goldstein's first case today. Dr. Arganbright will combo with him to check Lydia's ear tubes and to scope her airway. They will also draw her labwork so we don't have to do it when she's awake. That's a plus!

We are anticipating a 3 to 4 hour wait until all is done and we can see her in the PICU.  I'll update the blog by the end of the day, promise!

I Still Would Have Chosen You

"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... 

If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

If He had told me, "This soul may make your heart bleed," I still would have chosen you... 

If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you... 

If He had told me "This soul may one day make you witness overbearing suffering," I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change," I still would have chosen you... 

Of course, even though I would have chosen you, I know it was God who chose me for you." 

Terri Banish.