Things around here can change pretty quickly. Friday (snow day), Saturday and the beginning of Sunday were amazing. We did a photoshoot for Valentines day and for Olivers upcoming birthday. We took the kids “sledding”, watched movies, had a (few) bieber dance parties. and then wham! sunday afternoon she wakes of from her nap sweaty, breathing heavy, and stats (heart rate, and oxygen saturation) are off. We normally only monitor when she is sleeping, but we decide to keep them on throughout the evening an watch at her heart rates slowely climbs through the 150’s, 160’s, 170’s and her oxygen starts sliding from 99, to 97, to 95, and lower.
We started her therapies after Oliver went to bed. A round of chest percussions, her routine on the cough assist, and (her least favourite) deep nasal suction. Her numbers came up slightly, but not enough for us to send her to bed without some further assistance so we put her on oxygen. Myles “slept” with her and continued throughout the night to do her treatments and tried to keep her levels in a more normal range.
But on Monday, her heart rate started creeping past 180, and even with oxygen we were struggling to keep her at 95%, and when around noon she started up with a fever that clinched it. We called our paediatrician and then the respiratory fellow at Sick Kids who told us to come in.
They have run cultures, cap gas, chest xray, and put her on Bipap, antibiotics, and have added an NG tube to ensure she doesn’t loose any more weight. She is such a trooper. Words cannot express how proud we are of her and how brave she is. Its sometimes hard to imagine she’s not even three.
She’s been winning over her doctors and “nursies” with her chatter and smiles. Yesterday she got a surprise visit from some of the Maple Leafs. I’m sure daddy was more excited than Stella! We’ve been breaking all the rules of ICU – bringing in coffee, “sleeping” with her, etc. I still can’t figure out why they’re aren’t beds. I think the parents have suffered enough! But we are getting great care, and they listen to us which is great. We know they’re the doctors, but we are her primary caregivers and there is value to that as well.
For me the worst part is that SMA doesn’t just steal strength and eventually life. It steals the days and moments that make up that life as well. Today is Oliver’s first birthday, and just like at Christmas, our family will not be celebrating together. We hope she is better for the weekend so that we can have the party he deserves, and celebrate in this milestone as a family.