Saturday, August 26, 2023

Pulmonology & Sleep Study all in one day



We left for downtown around 6:30 am, grabbed drive-thru breakfast and made it by 7:30 am for pulmonology. Lydia goes through two testing procedures every 6 months to measure how much air she can inhale and exhale. Her inhale is above the 80% threshold and that's great.  Her exhale is all over the chart due to her not being able to perform the test well, she's still learning. All in all a good visit. We'll continue with a daily inhaled steroid and hope for a good year of minimal respiratory viruses. Can we go to back to Colorado yet? Remains to be seen, she should be okay and we have to go to find out.  Maybe we'll try Denver first, then Breckenridge, then make it all the way up to Twin Lakes.

Same day, different appointment.

Dan and Lydia left for CMH KS around 6:15 pm and made it by 6:45 pm for a sleep study. Lydia has about one sleep study a year to test her obstructive sleep apnea and see if she still needs CPAP. This requires her to be all sorts of sticker'ed and wired up for testing. Before her airway surgery, Lydia had 50 episodes of apnea each hour - severe obstructive sleep apnea.  Since the surgery and two years later, Lydia had 3 episodes of apnea each hour - mild obstructive sleep apnea. YAY!  This means we can probably wean off of CPAP.  We're going to make a plan for that and also keep it handy during cold & flu season and fall allergies. I'm so happy for her that she can get rid of this. I'm so proud of her for sleeping with a mask, head gear and tube for the last two years.  I'm cautiously optimistic that we are over a hurdle. 




 

Saturday, August 19, 2023

Lydia Rose, 3rd Grader

8 years old.
3rd grader.

Hope you have your best year yet, Lydia Rose.
I am excited to watch you learn, grow, and form strong friendships.


Sneak Peek Night!
Lydia got Mrs. K, exactly who she wanted.



First Day of 3rd Grade!


Oh and good news from her yearly check up. 
Lydia is now in the 8th percentile for height and 22nd for weight.
This is only her 2nd year on the growth chart, like even on it, ever. 
And that's on the typical kid growth chart, not event the adjusted one for 22q11 kids.
Get it girl, keep eating all the gouda cheese.

 

Finishing summer strong.


Once Lydia got all patched up we finished the summer as strong as possible.  
No pool time with her stitches so we found other ways to beat the heat.



Rain delays turned sunny skies for Girl Scout Day at the K and Library Day at the K.


Legoland at Camp Grandma... 
Lydia joined a new camp since she couldn't attend outdoor camp with her stitches.

 

Cheer Class!


New glasses since the other ones snapped when she fell.


Annual Riggs Slip 'n' Slide with the neighbors!  
First day Lydia could be back in the water and start wearing sunscreen on her stitches. 



Bike rides, baby sitters, soccer practice and Craft Putt.


The Stinger's fall season has begun...in the rain turned scorching heat.  Team snow cone trip after the game!  Then #54 finished out the day in Pat's garage, watching golf and playing slots.  

Now it's almost time for 3rd Grade!



 

Tuesday, August 1, 2023

Healing.


Scared and timid at first, not wanting it to be touched.  Me not wanting to touch it but having to clean it and medicate it.  She loved the antibiotic they put her on, bubblegum medicine. 


Getting back to her normal self and developing quite the shiner.  Mom and Dad slept on her floor for four nights because we were all worried about her sleeping on it and disturbing the stitches.


She was a very good patient and after 3 nights we were able to put her CPAP mask back on and she slept much better.  We all did, back in our own beds, knowing that it wasn't as sensitive any longer. 


Today, August 1st, we are 3 weeks out and she can swim, wear sunscreen, and go back to camp!


These last three pictures are from the 18th, 21st and 23rd.  Things are even more improved now!


 

This is where things get bloody.

 

I received a call from camp around 11am.  Lydia's face was cut, they didn't know how and there was a lot of blood.  Luckily I was working from home and was very close to the park.  I grabbed a bag, a change of clothes, some wash clothes, gauze, wrap, tape, some snacks.  Also, Lydia's iPad, I knew this was going to be a long day.  

The camp counselor met me at the car and said, "I don't know what type of parent you are and what you can handle."  I said, "try me, let's go."  Lydia came walking to me in near hysterics, holding a bandage to her head.  They asked me if I wanted to see it and I said no, not yet.  Another counselor came walking up with her broken glasses, another with all her belongings.  I wrapped the bandage to her head so she could stop holding it and make it to the ER without bleeding all over herself any more.  


The story was, she was on the zip line thing on the playground.  You hold on and it takes you across in the air on a track.  Kind of like automatic monkey bars, you just hold on and go.  It's really fun until it's not.  Until you lose your grip, fall from about 6 feet in the air, and the only thing between your head and the rock hard step is your glasses.

We went to CMH KS and sat in a room for awhile so a few people could look and all agree that plastic surgery should do the stitches since it was a little jagged and on her face.  I agreed.  No plastic surgery services at CMH KS. So we went left and went to CMH Adele Hall.  The ER lot was full, thankfully the ER was not.  They were expecting us.  I used valet.  In all my trips to CMH this is the first time I used valet.  Lydia wouldn't change her blood soaked shirt because she didn't want to get any more blood on the Harry Potter shirt I packed.  So there we sat some more in a stinky bloody shirt with the original dirty cuts on her face covered in whatever amateur bandages me and counselors came up with. 


We waited.  I asked for sedation.  They told me no because of her medical history.  Child Life came to try and keep her calm during the procedure.  Have you met her?  She doesn't do calm when there are pokes of any kind involved.  It was nice of them to try. After Lydia jumped off the bed and escaped the room once and attempted another time, I looked at the room of 5 medical professionals and said, "this isn't going to get any better, let's wrap her, hold her down and get this done."  

I wonder what these people think of me sometimes. I don't sit in the chair and wait.  I don't hold her hand and comfort her.  I hold her down, swaddle her tight, hold her head or other body parts.  I have watched blood draws, I've watched central lines go in, and now I've watched stitches.


We wrapped her in a sheet like a burrito as best we could.  This girl is pure muscle, growth hormones, remember?  Child Life had her right leg.  A nurse had her left leg. Another nurse had his elbows pinning her arms while laying on top of her to use his hands to steady her head.  I was right in her face trying to talk to her about Taylor Swift, 3rd Grade, and how many Robux she wanted for Roblox when all this was over.  The surgeon and his student were also right in her face stitches up the raw flesh on her face.  

If the nurse, surgeon, student, Lydia or I had any illness to share in that moment we all would have it.  We were up in each other's business.  I saw the inside of Lydia's face, under her skin, exposed things that I was  never meant to see.  I also saw them numb her with big needles.  I also saw them sew her up with curved needles.  It was all way less glamorous than the hot plastic surgery doctors on Grey's Anatomy make it seem. 

After about 6 hours of fun in two ERs, we were done.  The message from the doctor was no sun, no pools, no sunscreen for 3 weeks.  All my energy left my body.  I felt exhausted at that point.  He could tell.  He hugged me.  Maybe it was for me, maybe it was for her, or maybe him, but we all needed that hug. The nurse took her to pick out prizes and I nearly lost it in the empty room.  I don't lose it much when it comes to Lydia's medical demands.  I done that day.  You wipe the tear, take the breath and you smile as she comes back in the room talking like that last traumatic 30 minutes never happened.  

Amazing, Brave and Courageous Lydia.

What the heck was I going to do with her for 3 weeks and no summer camp?  

  









July was off to a great start...

July was hot. July was sunny. July was filled with sweet sounds of summer.



We dipped in the pool as much as possible to cool off.


We celebrated the 4th of July with all the neighbors, block party style.




Lydia was Lydia - sneaking chocolate, going to cheer class, and making the best out of this way too small driveway pool on an exceptionally hot evening. 


And then...

 

Inside Out: Lydia's Version

Anxiety - yep, about most things. Envy - uh huh, and wondering why she's different. (scars, treatments, growth hormone shots, CPAP, IE...