Posted: 04-30-2025
The day began after a previously uneventful night, with a new NG tube placed this morning. UNC Hospital typically replaces them every 30 days, and ironically, it clogged today—on day 32.
Dallas sat up (think small sit-up/crunch) in bed while we were talking about her improved eye tracking and increased alertness. Later, she sat up again—higher than before. What a GREAT start to the day, we thought!
Her blood pressure was a bit low, 82/58, which delayed the start of her final PLEX (Plasma Exchange). Since the previous NG tube had clogged, she hadn’t received any of her breakfast feed—or the water flush that normally follows. With the new NG in place, the nurse got the feed going and pushed some saline through her IV to help with fluids, hoping we could restart PLEX.
Around this time, the PLEX nurse commented that Dallas had much better eye tracking than during her last PLEX session. That’s when the day took a sharp 180° turn…
Suddenly, Dallas’s heart rate raced into the 160s. She tensed up, crunching and tightening, and everything changed. It appeared she had vagaled—a sudden drop in heart rate and blood pressure sometimes triggered by pain, trauma, or stress. Her heart rate crashed into the 40s, and her blood pressure, oxygen levels, and respirations plummeted. It became a true EMERGENCY situation.
A room full of nurses and doctors rushed in, including someone from the emergency response team who calmly took command—an incredible, grounding presence in the middle of chaos. Needless to say, the PLEX was immediately stopped and disconnected from her central lines.
Dallas showed signs of cyanosis (bluish lips/skin due to low oxygen), and they quickly administered oxygen. Sternum rubs began. The room was tense and focused. Her body stayed clenched, her belly tight and distended. She let out sighs and moans of pain—sounds no parent ever wants to hear from their child.
After what felt like hours—but was only 5-10 minutes—she had a BM, though her belly remained swollen. Her vitals improved ever so slightly, but her heart rate hovered in the 170s.
Dr. Coletti, the attending physician, examined her and noted how full and gassy her belly was. They vented the NG tube to help release trapped gas and kept it open the rest of the day. Warm packs were placed on her belly, and she was given Tylenol and Simethicone (Gas-X) to ease the pain.
We turned off the lights, played soft instrumental music, and tried to create calm. Her heart rate stayed in the 170s, respirations around 40—down slightly from earlier. Small, but meaningful, progress…
Around 4:45 p.m., she finally got a brief nap—maybe 20 minutes. Her vitals dropped slightly during sleep: heart rate and respirations both down by about 10 respectively. By 5:30 p.m., her heart rate had eased into the upper 140s/low 150s, and respirations stabilized in the 20s.
Her central line dressing needed to be changed, and we decided she was stable enough. She tolerated it well, with no spike in vitals… phew!
Although her NG tube had just been changed this morning, there’s talk of replacing it again—possibly tomorrow—with a type that allows for suction to remove excess fluid or gas, if needed in the future.
By 7:30 p.m., her heart rate was down to the low 120s, respirations at 21, and blood pressure 98/75—MUCH better than earlier and close to her morning baseline. We’re not sure about that 5th PLEX therapy – they may try to repeat tomorrow/Friday, or we may just get back to the IVIG and Tocilizumab.
The day was filled with lots of uncertainty, anxiety, and all the emotions that come with these intense moments. But the nurses and doctors stayed close by, and although it felt endless, we did see improvement. Our Dallas is one tough cookie.
“Waitin’ for the day your ship’ll come in, And the tide’s gonna turn an’ it’s all gonna roll your way.” – Dolly
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We are praying for Dallas ❤️
Poor Dallas and Mom & Dad. What an emotional day. Brett as you said, you saw improvement, so my prayers tonight are for a peaceful night for all of you and tomorrow may Dallas have more improvement. 🙏🏻❤️
Sending prayers and love and hugs your way 💕
Oh goodness – that was stressful reading it, let alone what it must have felt like for you all. All the hugs and YES your Dallas is one tough cookie.
Gosh I can’t imagine how stressful this is/was for you guys. She’s tough for sure, but so are you!! I’m praying that you all get rest tonight and a much less eventful day tomorrow! xoxo
Oh my goodness, how scary! So sorry you all had to go through that. You are correct, Dallas is one tough cookie. Prayers will continue along with sending love and hugs.
Hugs to you both as I am certain a day like today is beyond scary and super stressful. Take a longer shower, wash this day off. Use the head massager I sent to you. Take a moment to sit with each other in silence filling your spirits with positivity for a better day to come. Visualize the day you get to take Dallas back to the beach to play in the sand and dance. Your girl is strong…she gets it from you both. Allow yourself to sleep tonight…Dallas needs you to take care of yourself, so you can continue to give her strength. Love to you all.
Praying for you guys!!! I can’t even imagine. Dallas is a strong little girl just like her momma!
A frightening day for you, so thankful her numbers are better now. Sweet little fighter, brave one…sending love, my prayers and hope you momma and poppa sleep tonight. Glad she is surrounded with such dedicated doctors and nurses. Gentle hugs and kisses dear little one.
Oh Heather and Brett, such a hard day for all. Dallas is a strong cookie she got that from you two.
Rest well…hugs
Wow a scary stressful time! I hope those days are soon behind Dallas!! Good thing is there was still progress made! Sending many prayers, hugs and love your way for all of you!💝 Better days are ahead!!!
💞🙏💞🙏💞🙏💞
Sweet Dallas is such a fighter. She’s so incredibly blessed to have you both so aware of everything that’s going on. I felt so stressed just reading your update, I can’t imagine how you felt while it was going on. Sounds like the medical team is right on top of it. Prayers coming continuously……..
I imagine writing this was as traumatic as the experience itself–thank you for sharing. Praying for comfort and strength.
That is a LOT for parents to observe of their precious baby girl. So very sorry you all experienced that traumatic time. Thankful for professional medical caretakers. Praying for a peaceful day today.
We are so sorry for this bad set back. Poor Dallas is such a fighter. Take a deep breath and know that God is in control. Though at times you must feel he is nowhere near. There are more people than you can imagine that are praying for you three and the doctors.