Tuesday, May 31, 2022

Highest Elevation Emergency Room Visit

We left at 5:00am on Thursday the 26th and headed for the mountains, our first of many trips to my parents new home in Twin Lakes, CO.  I've been waiting for this house for 20 years.  I remember the day they called my landline in college and said they were in Colorado and had bought some land.  The house finally went up and we were looking forward to a week of mountain fun.  We made it by about 4:30 or 5:00pm, unpacked all the things, toured the house and were preparing for dinner.


Our Colorado vacation took a very eventful turn.  Perhaps I should have known or realized or thought to have asked how Lydia would do at high elevations, specifically 10,000 ft.  Now we know.  She went out when she was 3 and did fine.  I guess the continual infections, CPAP, reactive airway and bronchomalacia have made that not so any longer. I should have known.

We reached Denver and Lydia started to complain of muscle cramps in her legs.  We reached Silverthorne/Frisco and she started to complain of back pain.  We thought she might be dehydrated and started giving her lots of water and she stayed restless dozing in and out of sleep the rest of the way.  

We reached Leadville/Twin Lakes, pulled up to my parents home.  She was excited and energized to see the house and run around but quickly laid down on the couch with a pillow.  Not like Lydia.  I checked her temp, normal.  Gave her water, hardly drank.  Checked her pulse ox, thank goodness I did.  Her blood oxygen was in the 60s and her pulse was racing.  We packed up all her meds, called the hospital in Leadville, St. Vincent's, and headed for the ER.  

They immediately put her on 5 liters of oxygen, did a Covid, flu and urine test, along with bloodwork and cultures - all negative or normal.  The chest x-ray was concerning to the doctor so I had him call the pulmonologist on call at CMH. They started albuterol treatments throughout the night, continued the Augmentin, added a prednisone steroid, and Lydia stayed on oxygen throughout the night.  She couldn't come off oxygen and stay out of the 80s and the doctor said 92 was normal at 10,000 feet.  We got supplemental oxygen for the drive from Leadville to Denver on Friday, dropped it off and didn't refill it  because Lydia was at 94 or 95 without it.

We continued home, stopping for the night in Goodland.  Lydia loved the hotel, as usual, and was back in good spirits with high energy and her appetite was coming back.  We pulled up to the house at about 5pm on Saturday, our trip cut short by 3 days and it was just that, a car trip.  She's the priority and we did everything right by her, but my goodness I'm sad and disappointed and a little lost for words.  I spent about 2 hours total in my parents house, never took a hike, didn't eat a meal with my parents, slept in an ER chair, barely noticed the mountains, and I don't know when I'll be able to go back.  And I don't know if Lydia will ever be able to go back.

She was so brave.  Never complained.  Just kept asking from her ER bed when she got to go back to Colorado and do her Legos with Grandma.  She doesn't realize hospital trips and ER visits aren't typical.  She doesn't know that the Colorado trip was supposed to be very different than what it was.  Friday morning she laid in her hospital bed, on O2 with line access and monitors on, and we made a list of things to do on vacation, when we got home.  We're checking them off one by one and trying to make the most out of it.

Our staycation includes playgrounds, swimming, the Arboretum, Legos, a backyard bbq, maybe Deanna Rose, bowling, and a sleepover at Grandma and Grandpa's...at their house that is NOT in the mountains.

Lydia amazes me.  While having her blood drawn she commented on the boring color of the walls and how her blood was red, which is Grandma's favorite color.  She was excited to take chest xrays because she's good at xrays.  She can put her own nasal canula back in place after blowing her nose.  Sitting at a meal a Friday she tells me how nice Papa's house in the mountains is.  

Lydia has a good outlook on the whole situation and says that maybe we should go to the beach on our next vacation.  I don't like the beach.  I'm going to learn to love it!

Tuesday, May 24, 2022

Finishing First Grade as a Golden Eagle


Golden Eagle awards are picked monthly by the school counselor.  After some of Lydia's most anxious moments of the school year, Mrs. Newell awarded her a Golden Eagle Certificate for Perseverance.  We are so proud of her amazing bravery and courage to push through.


Other highlights of May and the end of First Grade:


Mother's Day Flower Photos from School.
Lydia is a style icon.  This is the tie dye she made at Y-Care Field Day.


Lydia wore black and gold for LVE Spirit Day 
and choose to dress up her look for KC Royals Day!


And finally, Field Day!  Mr. Bond, the teachers and all the volunteers put on a great time for the kids.  Lydia had a terrific time and showed us how to play all the games that night.


I wish I had those first day and last day of First Grade photos to show off.  
That was not our reality this year.  Those awesome photos from Field Day are how I'm going to remember the end of her year at school.  


First Day and Last Day of First Grade.
2021-2022

Saying our prayers and crossing our fingers for better health this summer.  She's 5 for 5 on how many months she's been sick in 2022.  I'd sure love for that to change in June.  Let's make 7 years old and Second Grade your best year yet, Lydia. 

Thursday, May 5, 2022

The Anxious Parts: To know her is to love her

 




The 1st grade school musical program of GLOW: An Earth Day Musical.

Lydia was a butterfly and had a line in the show.  She knew all her songs!

And then the performance happened. 

My sweet girl battled her anxiety and fought back tears while singing through 4 or 5 songs. She went up to deliver her lines and was so good, even though it was through tears.  After that she had a release cry, she had held it together for half the show, delivered her lines and was D.O.N.E.  Mrs. Evans went and got her off the stage and we met her in the nurses office, she just could not go on. 

This is Lydia.  This is who she is.  We try to prepare her, coach her through, pep talk her up.  She has anxiety and I can't solve that for her.  It's hard and it breaks my heart to see her have to push herself so hard to do something that others are enjoying. 



Lydia was the 1st grade winner of the Kindest Kansas Citian Essay Contest.

She nominated our friend and neighbor, Pat.  They are buds.

And then the assembly happened.

My sweet girl battled her anxiety and fought tears leading up to the assembly, during and after.  Coming off the not so high of the musical program, Lydia worried and fretted all week.  She talked to the counselor and us about the assembly.  We made plans to stay in our seats when being recognized so she didn't have to go up in front of the room.  She could hardly let go of Dan or I and barely talked to Pat and Ronda.  We waited for the gym to clear out and Lydia came around for a picture and to show off part of the school to her friend Pat. 

This is Lydia.  This is who she is.  I want with every fiber of my being to egg her on, nudge her to the front, just push her through it.  That is not going to help and is not what is best for.  Dan and I both can talk in front of a crowd, deliver a speech, perform!  It is not for her right now.


Lydia had a Piano Recital on Sunday May 1st.  It would be her first.

Lydia was to perform Rainbow Colors and Do You Want to Build a Snowman. 

And then pink eye and a fever happened.

My sweet girl knows her songs so well and can play them from memory.  She's been practicing for months and knows how to play them beautifully.  Ever since the mention of the word recital and learning what it meant, Lydia has been dreading it.  It took a lot of convincing for her to even try to learn the pieces because she didn't want to play them on stage.  Her teacher coached her, we came up with plans for Lydia to sit next to her teacher, to have her teacher and I on the bench with her.  Once the music program and the assembly happened we were pretty sure we wouldn't be using those tactics.

We were planning to attend the recital and observe the experience for Lydia to learn what it was about and see other kids like her.  Then she got pink eye.  Then came the fever and vomit.  Followed by congestion and fluid in her ears.  You know that story - I've written it more than a dozen times. 

This is Lydia.  This is who she is.  I want you to be able to hear her play the piano.  I want to be able to invite her grandparents to school performances rather than her tell me to just send them the video.  I want her to be excited and confident about showing off her talents.  Comparison helps no one in this situation.  This is Lydia. I love her.


 Lydia's anxiety around these experiences is simply too high.  We aren't letting her have the easy way out.  We are letting her call the shots and give up.  We are responding to her feelings and emotions and answering them with safety and care.  Until you've felt her trembling little body cling to you that tightly in those moments, you may not understand.  That is okay.  That is why I'm writing. 

To know, know, know her
Is to love, love, love her
Just to see her smile
Makes my life worthwhile
Yes, just to know, know, know her
Is to love, love, love her
And I do and I do
And I do













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...