All the Christmas Cheer

We kicked off our holiday season in St. Louis for Thanksgiving and Jillian's 7th Birthday!

Love these girls and the fun we all have together.

Dear Santa, I can explain!

Saint Nick visited on the 6th!

Our neighbors gifted us a sweet Christmas experience!  

The Gingerbread House kit is complete!

Next up hot chocolate bomb making kit!

All while drinking many cups of hot cocoa in elf mugs!

Lights on Farmstead Lane!

We spread out the tree decorating for 3 nights because mom sticks to bedtime.

A little Riggs Family Christmas artwork.

If you see a piece you like, name your price.

You can see that one is signed by the artist.

Cookie day fun with Grandma ... 7th year for Lydia, 38th year for me, Mom's not counting! 

Followed by finding the leaves PaPa missed and throwing them everywhere.

Someone celebrated a half birthday at school!  Lydia turned 6.5 years old on the 14th and we gifted her 24 brand new black sharpies.  We're nuts!  She is very into drawing and following along with Drawing for Kids.  Her classmates made her a birthday book and she wore this hat all day.

This is Lydia's gift wrap and artwork present for Mom and Dad.  She was so excited to gift it to us she let me open it then wrapped it back up for Dad to open when he got home!

We got to go to the KC Symphony Christmas Festival again this year!

Oh how we missed it last year.  Such a special time for us. 

We sit right behind the horns so Dad can be thoroughly interested, 

so Mom can watch the conductor because he's amazing, 

and so Lydia can have some room to dance around next to our seats

...it's a row of 3 made just for us.

And now we are just counting down the days until Jesus's birthday!

 

One Month Post-Op

One month surgery post-op appointments happened last week for Sleep and ENT.  We'll see Pulmonology in February.

Where in the world is up north?  It's north but that's about all I know unless it's concerning the airport.  Winding highways with lots of trees and you don't see much until you exit.  It's like they are hiding the shops and the house and the people.  I'm such a straight lined, city block, type of gal.

We find our way to the Sleep Clinic where Dr. Ingram sees patients.  He comes in and immediately shows me the graphs and says, "I want to know what happened on the 17th."  I don't know!  So we talk and think and I search my calendar.  Ah ha!  Dr. Escobar ordered an antibiotic to kill all the gunk in her lungs and clear the bacteria out.  We started it on the 14th.  It kicked in.  Why does he ask?

Lydia went from 50+ sleep apnea incidents per hour before CPAP to sleeping soundly with CPAP for 11 hours a night, still have many incidents but far fewer.  Then she had surgery, was readjusting to wearing it about 6 to 8 hours a night and having about 10 to 12 incidents per hour.  Then on the 17th and there after, 3 hours a night and 1 to 2 incidents per hour.  What happened?

We think the Augmentin cleared up some lingering sinusitis or something!  Whatever it was, we are grateful.  And the chronic cough?  Gone. Now we watch to see if she stays this way or the apnea comes back.  What happens the first time she gets sick?  What happens if her adenoids grow back, again?  What happens if her turbinates swell, again?  Sleep study planned for April to asses her need for CPAP.

Oh and about that being sick part.  Lydia was sick with an upper respiratory illness every month from May to October, 2021. School was out, vaccines were happening, masks came off, and wham.  Lydia had an early to mid October illness and hasn't had anything since, over a month and a half. Knock on all wood surfaces for me, okay? 

ENT checked out better than it ever has, truly, best ever.  Her ear tubes are functioning perfectly.  Her auditory tests came back 100%.  Her nasal passages are open.  And best news yet is that she is sleeping quietly and breathing easily, she is able to be a kid and breath in and out without struggle, labor and over exertion. Dr. Arganbright and I are taking the W.  It's just amazing where we've been and what we are experiencing now.  I often don't think Dan and I don't realize how scary our reality is until it's fixed. 

Lydia's CT Scan before surgery showed a comingling of contrast and non-contrast blood in her scan where the vein from her neck joins the vein from her left hand.  This could be a false alarm or it could be a clot.  She had her ultrasound last week, as well.  No results yet.

Pulmonology follow-up in February.  Dr. Escobar found from her lung cultures that she is growing normal bacteria.  He treated this with a two week regimen of Augmentin and it really helped.  All these sinus symptoms we've been treated for a long time with Montelukast, Flonase, Flovent, Albuterol and Zyrtec...maybe just gunk in her lungs that needed an antibiotic.  We'll see what comes next. 

All in all, things are going well.  Still some unknowns lingering out there.  We will wait.  Oh and in the meantime, Lydia got her 2 doses of the Covid vaccine.  I'm not preaching about our decision or shaming anyone for a different one.  I'm just sharing my relief that we can do what we believe is best to protect her and her heart and lungs.    

What's Up, November!

The Daisy Troop visited the Alpaca Farm and had a super fun time.

The girls were up close with the alpaca's and were able to take one for a walk.

There was a hay ride, impromptu sing a long and a craft.

Jumping in the leaves, every chance she gets.

Those curls!

First does of her Covid Vaccine administered!  Power up!

Play date with some girlfriends.

 

Two pajama days this month!  

One for book fair week and one for Thanksgiving week.

Lydia's Family Tree.

When she pushes the big cart she reminds me of Kevin from Home Alone.

 

Surgery #10. I don't like new.

Surgery days are strange.  I find a sense of calm and normalcy.  

We go, Lydia gets her calming medicine, we say goodbye to a drowsy, giggling little girl that most people in same day surgery know from the previous 9 times.  Dan and I take our usual seats in the surgery waiting room and one of us claims responsibility for keeping friends and family updated and one of us calls being the person to go get food and drinks.  One of you has to stay in the waiting room in case the surgeons need to talk to you.  We read, I crochet, this time we both worked and remarked at how much we got done in those 4 quiet hours.  

It's afterward that isn't fun.  Post op recovery and a night in the hospital isn't a great time but that isn't the part.  The follow-up visits, waiting on all the right people to read the scans, the part where the surgeon tells you what else they found and then navigating another turn on Lydia's highway of medical life.  That's the part I don't like. 

Tuesday, November 2nd, 6:30am arrival at the hospital. By 7:15am Lydia is loopy from her calming medicine and we say "see ya later" and give her kisses. She gets sedated for her CT Angio Scan. Surgery follows.  

By 8:00am or close to it Lydia is done with the CT Scan in radiology and was taken to the OR. They put her to sleep even more and get line access. Then procedures begin. 

1. Bronch ... A deep one into her lungs, no biopsies, only imaging, maybe lavage and suction.

2. Bronch ... Upper airway evaluation. 

3. Ear tubes ... she's graduating into a bigger kid size.

4. Any other intervention to ease her breathing and apnea...possibilities are supraglottoplasty and superior adenoid reduction...it's a game time decision!

Bronchs completed and we talked to pulmonology.  Dr. Escobar reports that Lydia has been holding mucus in her lungs and there is some narrowing or floppiness deeper into her lungs. This is due to 22q11, heart issues and low immune system. Her aorta is pushing on her trachea just above where it stems to her lungs, that's a mild concern. All treatable, not fixable, but no plan yet. Dr. Escobar did the lavage, which is basically washing out with saline and then suctioning out the mucus and capturing a fluid sample for the lab. 

ENT went next and finished many interventions after calling us to make sure we agree and consent to them all.  Dr. Arganbright performed a supraglottoplasty to help combat the laryngomalacia which was almost a complete collapse of her upper airway. She said it was possibly the most severe before and after she's ever seen.  Dr. Arganbright removed as many adenoids as possible without impacting Lydia's speech, though they are trimmed they are still obstructing. She also did an inferior turbinate reduction which is basically clearing out the nasal passages all the way to the back of Lydia's nose, they were almost completely blocked too.

By 12:30 or so we were in post op recovery with Lydia and she was waking up, very irritated and had pulled out her IV access.  So then we get to go through putting in new IV access - yay - gah - sigh.  This the 2nd surgery I've been in post op recovery, both times I'm requested to get in bed by Lydia so I get to roll through the halls of CMH with my girl, snuggled in bed with warm blankets.  We check in to the 6th floor, which is awesome because the 4th is the cardiac wing and it's also nice when that isn't a risk factor.  Lydia eat some sort of mac and cheese.  Dan and I have BBQ delivered because friends take care of friends, especially when they've eaten that hospital food too many times themselves.  

1 week and 1 day post op and Lydia is still is adjusting to being better able to breath through her nose, though it's not perfect, only improved.  I think she's still adjusting to just the changes in her anatomy and how to handle things like cough and secretions.  She isn't mouth breathing as much though, because she is going through fewer masks at school.  

Lydia still has a chronic cough until we can find a treatment for her lungs.  Treatment may be antibiotics, breathing treatments, or a cough assist vest.  I guess we get to see pulmonology regularly now.  This part frightens me.  Lungs are important.  Breathing is important.  This is new and I don't like new. 

Lydia's airway is much improved and more open than before so her breathing, especially when her head is downward, is less noisy.  She's quieter when she eats and sleeps too, much quieter while sleeping.  She's also taking her CPAP off during the night and keeping her O2 saturations above 95%. It was a struggle for her to stay over 92% with the CPAP on before surgery.  She'll do another sleep study in a couple months to find out if she still needs it or not.  

Lydia was receiving the CT Scan for her lungs and also for her heart.  It gets a better picture of the aorta and the repairs she had at 11 days old. Dr. Shah called tonight, after 6pm, which just makes it seem more important to me but maybe he was just busy all day. The aorta looks good but is big and the patch has some dilation or enlargement.  It's still in an okay size range but he will continue to watch it and monitor it.  Lydia is being scheduled for an ultrasound because there was a comingling of contrast and non-contrast blood in her scan where the vein from her neck joins the vein from her left hand.  This could be a false alarm or it could be a clot.  So that's new.  I don't like new. 

All in all the surgery was a success, a major one concerning her airway, and we were handed a bit of new.  

This is Halloween. This is Halloween.

 

Lydia dressed up as Mal from Descendants three times for Halloween!

I had a lot of fun with this costume and am glad we just bought the jacket off marketplace.

She was so excited to have her hair straightened and colored purple three times!

Dressed up for school!

Trunk or Treat at Church!

Carving our GIANT pumpkin!

So big we carved both sides!

Lydia showing off her hair and Lydia with our neighbor, friend and her bestie, Pat.