Saturday, May 10th
May 10, 2025
We were thankful for the quiet night last night and the slow, easy Saturday morning start that it allowed. Today gave us a much-needed breath, one we didn’t realize we were holding.
We’re officially done with this current round of IVIG. We’ll also start tapering her steroids again on the 14th. Eventually, the hope is to move her to an oral steroid, but for now, we’re easing into things, not wanting to upset ... Continue Reading
Friday, May 9th
May 9, 2025
Last night wasn’t one of the better ones, unfortunately. Papa said she was uneasy or stirring often, and her most restful sleep came in two windows — early on in the night and then again for about an hour this morning. Through most of the night her heart rate stayed in the low 100s to 1-teens range, which is about where it remained though most of the day. A few vocal sounds while ... Continue Reading
Thursday, May 8th
May 8, 2025
She’s tolerated her feed well today and, overall, her vitals have stayed stable. We’re still keeping an eye on her phosphorus, which remains just a bit low, so that’ll be something we continue to monitor and adjust for as needed.
Her current five-day run of IVIG wraps up on Saturday. We’re still holding off on her gut meds for now, but if all continues to go well with feeds, the plan is to ... Continue Reading
Wednesday, May 7th
May 7, 2025
Luckily, Papa and Dallas had a pretty quiet evening, despite Papa finding a good basketball game to watch!
During morning rounds, it was confirmed that the cardiac and hematology teams plan to repeat and re-evaluate an echocardiogram next week, to ensure the thrombus/cast in the heart is either unchanged or improved. In the meantime, the blood marker for the blood thinner she's on looks good. There's also no sign of bacteria from her ... Continue Reading
Tuesday, May 6th
May 6, 2025
Because of last night's lower heart rate scare, we ran the full gamut of tests up until close to midnight: new chest leads, chest X-ray, EKG, echocardiogram, blood labs, etc. Thankfully, each test brought with it a bit more peace of mind that things were OK.
Since then, her heart rates have been more appropriate, and she and PopPop had an otherwise uneventful and restful remainder of the night. We may never know ... Continue Reading
Monday, May 5th
May 5, 2025
The plan for the day was to leave the PICU, and we can check that box – we’re back on the main children’s floor as of this evening.
Since no bacteria has cultured in her blood samples, we’re consolidating down a a single antibiotic from the 3 broad spectrum ones that she was on. Her “A line” was also removed, as they don’t use them on the main floor. Just a few things ... Continue Reading
May 4th
May 4, 2025
Dr. Ungerlieder, Dallas's heart surgeon, came by to check in on her and to remove her heart drain line. He mentioned that today might be her sorest day post-surgery, similar to how you feel a couple of days after an injury. Overall, Dallas seemed much more alert than yesterday. She's still struggling to visually track, and responding with her eyes continues to be difficult and tiring.
Her post-surgery echocardiogram today revealed the possibility ... Continue Reading
Thursday, May 3rd
May 3, 2025
Today brought a mix of hopeful steps forward and the usual delicate dance of managing recovery.
We had a visit from the attending Peds Surgery doc, and she seemed cautiously optimistic about where things are headed with Dallas’s belly. She noted it felt softer today, and nothing on the X-ray raised any immediate red flags. The plan for now is to hold steady—continuing bowel rest for another 5 to 7 days, keeping up ... Continue Reading
Wednesday, May 2nd
May 2, 2025
With the new NG tube placed last night, Dallas experienced some coughing, as the tube was now inserted through the other nostril and the placement felt different. The tube was also set to mild intermittent suction to help remove any excess stomach contents. She appeared increasingly uncomfortable and occasionally let out moans or sighs. Tylenol was administered via IV in hopes of providing her some relief.
The CT scan occurred around 11pm and ... Continue Reading
Thursday, May 1st
May 1, 2025
Dallas had a really good night last night, which was a bit of a relief after all of yesterday’s excitement. She had two BMs overnight and wasn’t disturbed by them at all, according to the vitals – a great sign! The plan was for PLEX to come in early, before any feeds started, to catch her while she was stable and before making any changes to her day.
She was super sleepy/tired this ... Continue Reading