Holly Jolly Christmas

 

Sunny got a nurse for Christmas!

Sunny started off this week helping her interim nurse, Erik, train one of the agency's newer hires. She was only slightly familiar with trach/vent kiddos, so they sent her to shadow their best. 
Holly was scheduled to shadow Erik Monday-Wednesday, but after Tuesday's shift ended, Erik asked us to think about Holly taking over for Sunny's care. 
We knew that he wouldn't be with us forever - Erik's role is above the day-to-day nurses and he primarily trains and helps fill in the gaps - but we were blissfully living in denial of him ever leaving us. We were initially told that he would be covering for 6-8 weeks, and I joked.....or passed it off as joking...that the timeframe restarts in the new year!
Holly is young, but VERY eager, willing, and attentive to Sunny. After a couple days, she was already putting some piggies in Sunny's hair, and was quick to ask if there were any concerns we had, or any suggestions for future care of Sunny. Erik said that out of the pool of options, he liked Holly best for Sunny. We like Holly, but his recommendation sold us because of how much we trust him. 

Other than having the additional person in the house, Sunny's week was pretty chill.
Last weekend, she was acting a bit off and I was sure she had a UTI....again. Sunday morning, she was FUSSY, more pukey than normal, had some odd smelling pee diapers, and an elevated heart rate - all the usual suspects. She mellowed some in the evening, and all of Monday, the only thing off was her slightly elevated heart rate. Erik reassured me that it was still within the "normal" range, but it wasn't Sunny's normal. He suggested we order some test strips, and if those say positive we would call Sunny's PCP. Tuesday and Wednesday, Sunny was normal. Heart rate normal, sleeping normal, and LESS puking than her normal?! She was throwing me for a loop, but we still did the UTI tests, and it quickly changed colors to indicate a UTI. We called her PCP, and they found us a spot to come in the next day. 
I explained that over the weekend I was SURE She had a UTI, but she was no longer really showing symptoms. I asked if that was something that could happen, and she said asymptomatic UTIs aren't common, but given Sunny's history of UTIs, her kidney and other bodily issues, that it wouldn't be out of the question. "Usually, the parents just know" She commented and Erik nodded. Even though he spent all of Monday trying to ease my worries, that was something he'd said multiple times to Holly during her training. He said, "It's not witchcraft, but it's like it....when parents say something isn't right, they're usually right." 
While I'm HOPING I'm wrong, it was refreshing to hear from these medical professionals that they truly valued my paranoia. 

Sunny was stingy with her urine, so they only got enough for a culture and not the dip test, and we're still waiting on results from that. I was grateful for an office visit for the training opportunity - Erik has always been at least a step ahead of me, anticipating my needs before I even knew I had them! Thankfully, we'll see him again. Because he's familiar with Sunny, he'll most likely be the coverage for any days Holly can't do. That makes the goodbye tolerable.


I think Holly will be wonderful. It's definitely going to be an adjustment - I cry every time I think about not having Erik come every weekday morning, but I do think Holly is a great fit. She genuinely cares for Sunny, and that's the main prerequisite. 


Prayer requests:
- Sunny's health! We're hoping to travel to see family for Christmas, so health leading up to, during & after the visit. 
- Smooth transition and good communication with Holly. Erik seemed to read my mind, so I'm anticipating having to be better at communicating wants, needs etc. 

Thank you!! I used to advertise a new blog on my instagram stories in the beginning, but I haven't done that in a while. We still have about 40 people reading these updates, and that truly amazes me. This elite crew checks-in for updates without a reminder from us. That's crazy. Your love for Sunny is CRAZY, and we love you for it. 


Merry Christmas!!!
Love,

Chris, Alyssa & Sunny

Cozy snowy morning

She's done over an hour with her HME trials, and has yet to notice being off the ventilator!

Probably almost too big for the swing

Sister naps

Mr Erik saying goodbye to Killarney 

He held her for so long, and then kept getting on the floor with Sunny to say goodbye😭

He's just the best

This week was lazy & cozy.