Setbacks
Day 11 in the PICU and it's been nothing short of a roller coaster.
Sloan recovered very well from the suppression we put her under last week in terms of her brain activity. Her EEG was showing no signs of seizures for several days. Thank God!
As a part of her sedation though, part of her right lung collapsed. It took us two days of aggressive treatments, but it recovered well too! We started seeing a light at the end of this tunnel and were weaning down on her ventilator settings in prep to get back to her room air baseline, removed her central line, weaned off meds and even celebrated her half birthday!
Then she got hit with a relentless fever which caused nonstop body twitching (myoclonus) and more neuro storming. We ran a number of tests, thankfully the EEG still looked good and she was no longer positive for adenovirus! Turned out to be a UTI, trach cultures (pseudomonas) aaaaaaaand a blood clot in her right leg from a central line despite it being removed a few days earlier. Antibiotics and blood thinners were added to the daily regimen. The blood thinners have to be given twice daily as injections for around 3 months since apparently there are no oral meds available for toddlers with seizures. UGH! A quick CT scan confirmed that the clot didn't make it any further than her leg though. Thank God!
Then her lung collapsed... again! This time it was the lower part of the same lung. Latest xray is showing respiratory treatments are definitely helping and we're slowly weaning her ventilator settings again. Thank God!
Then, (there’s more…) yesterday, her arterial line somehow popped open and we found her right arm in quite a large pool of blood shortly after the nurse had drawn some labs out of it. A terrifying sight that I'm sure will haunt us! Another lab draw later confirmed no intervention necessary though as her levels didn't drop too, too much. Thank God!
It'll take us a while to get back to her baseline with medications (weaning off certain drugs and getting her seizure meds back into therapeutic levels) and off the vent. Sloan is such a fighter and continues to show us her resiliency. She really deserves a break from all this pain and chaos. Please keep sweet Sloan in your prayers for continued recovery and no more setbacks!
To lighten the mood a bit, please enjoy these photos of Sloan pre & post spa day. Pre: Sloan's crunchy stiff hair even after multiple washes to get the EEG goop out. Post: Sloan enjoyed several soaks, massages and hair mask complete with hair wrap from one of her sweet nurses.
Maggie
