Thankful

November 14, 2025

Somewhat surprisingly, last Sunday we were able to stay at church throughout the whole service!

Sunny's end of the week and weekend were a bit off - she was nauseous and we were having a hard time figuring out if this was her typical "retch days", UTI(again:/), or something else.
At the beginning of last week, Chris had purchased some at-home UTI test strips as we were all paranoid of another infection when her retching began. So, Sunday night after a sad and gaggy day, we tested her urine and it showed positive for leukocytes; likely an infection. We took some time and got ourselves ready for likely another hospital admittance, and then took an early Monday morning trip to the ER.
When Sunny is doing okay and not needing emergent care, we drive to the Nemours ER so that if she does need to be admitted, she's already with her team.
Around 4:00AM we were situated in a room in the Emergency Department and told them about the positive UTI test, her recent UTI, and the similar symptoms. They began with a Urine Analysis(or tried to, but Sunny only gave them a tiny bit via the straight catheter and proceeded to immediately wet the bed after they removed the catheter. She's a feisty one:)
They eventually collected a useable sample, and proved the at-home test to be a false positive. An EKG, X-Ray, blood tests & respiratory panels all came back showing nothing too out of the ordinary. She was angryyyy. IF she fell asleep, she was unavoidably woken by someone coming in to do one of the aforementioned tests, and the minute she was awake she was retching and her heart rate was elevated.

For a few hours, they'd talked about admitting her for an IV to help with her sodium level. We were waiting around for that, and Chris went down to the car for a quick nap, then to grab the bags of supplies we'd brought for her stay. But then after a visit from the ED Doctor and team of ED Cardiologists, it was determined that they didn't feel it was necessary to have her admitted. They checked that we felt comfortable to take her home, and then began discharge paperwork.

Once we were home, Sunny-buns zonked out and slept for about 12 hours - the poor little bugger was so exhausted from her ER trip. She was probably also just overall fatigued from being nauseous all week, and this nap really did the trick. She woke up and was feeling SO much better! We were grateful for many reasons, but especially because she had two appointments at Nemours and the drive was much more tolerable.
She slept through both appointments, and then once again ended her day at the hospital with a very lengthy nap.
From that nap on, she's been pretty much her normal self! No retching, and her heart rate returned to her baseline numbers. It is SO wonderful having her normal sassy self back. She and nurse Erik have been doing really well with tummy time - he's always so attentive and will often entertain her with Finding Nemo from his laptop.

She's a week out from turning one. It's unbelievable & amazing.
She's outgrown most of her 12mo onesies, and is noticeably getting stronger. She's amazing. She's exhausting, and she's amazing.

Prayer requests:
- still looking for a few nurses for Sunny. Agencies are looking, but pediatric nursing is sparse and I think finding a nurse who is comfortable with trach kids is also tricky. They're out there, we just gotta find them:)
- Health for Sunny and her parents. With our wonky sleep schedule covering night shift, we're always tired and that's not great for the immune system.