When we first learned of Stella’s diagnosis we were told quite bluntly that a cold could kill her. After meeting other families and being involved in the SMA community for several years now we know this to be true. We are as vigilant as we can be about germs – at home, at school, at work, and out and about. We go into our own hibernation and hardly go out in the winter. We are sanitizer obsessed and actually get quite panicky in public situations when people are visibly ill. Its definitely one of hardest parts about SMA.
Right after Stella go over RSV, a few weeks passed, and she caught Rhino Virus. We ended up at Sick Kids for another week. She went from being slightly under the weather on the Sunday night to needing Myles, Myself and the night nurse working on her for most of the evening. Her oxygen saturation was terrible, dipping below 90. We did deep suction, cough assist treatments, and ran oxygen through her bipap. She spiked a fever of 102. We alternated Tylenol and Advil. And then her heart rate started going over 200 and we knew we were beat. Around 4am we decided to take her in. Unfortunately we have to drive her in ourselves. Our local policy states that people in critical condition must be transferred by ambulance to the nearest hospital. We know from a previous disastrous experience that is not where she needs to be. So for now we “risk” it, mobilizing our own mini ER into the van and drive as crazy/safe as we can.
we have so many socks with holes. cut outs for her pulse ox so we monitor her closely.
Deep suction. Stella hates this the most and I definitely don’t blame her. Its one of the worst things we as parents have to do to her. We know its for her own good. But it doesn’t break our hearts any less.
IV antibiotics seem to be helping.
As she recovers, we struggle to keep her and ourselves occupied. Skype dates with friends and family help. Sneaking in chips and chocolate bars. And of course lots of iPad and movies.
After two bad hospitalizations this winter we are exhausted. Her doctors have prescribed a low-dose antibiotic for her to take through till April in hopes of reducing her risk. We are also looking into alternatives for childcare for Oliver as we feel he is bringing home the majority of the illnesses from nursery school. Hard decisions. But a bubble isn’t one of them….unfortunately 😉