Laura's Story\

Laura’s Story – Part 34 – Illness

Shortly after Laura’s dedication on Mother’s Day, she came down with her first cold. We had been so careful with hand washing, hand sanitizer and just generally keeping her away from people but with a compromised immune system, it shouldn’t have been a huge shock when she got sick.

It seemed to come out of nowhere. She was fine one day and that night she was up every 30 minutes crying because she couldn’t breath with her soother in. No soother = no sleep so a plugged up nose was less than tolerable for her. The only solution was to pick her up and hold her vertically until the mucous could run down out of her nose and then put her back to bed. Once or twice we had to do the full gambit of running the hot shower and suctioning out her nose as well.

Laura being sick was so scary for us. This is what we had been fighting to prevent since we brought her home. Would we need to go to the hospital? Would she become dehydrated? What if she threw up her meds? For most first time parents colds suck but for us it was terrifying – we just didn’t know what to expect.

On top of our complete lack of sleep, we had a clinic appointment the next morning so we had to get up early to get Laura there for her lab work. Afterwards we went to clinic and let the nurse know that Laura was sick with a cold and that we were all probably a little cranky from lack of sleep. Much to our surprise, they didn’t treat it like a big deal. The response was

Oh yeah, cold’s are hard.

That’s it? Don’t you know our daughter had a heart transplant 5 months ago?

I think this was the first time we really realized that Laura was better. No one freaked out (except us of course) and no one called in the Rapid Response team to make sure she was fine – it was a cold, she’d get over it. They assured us that Laura’s white count was always very good considering her immune suppression and that her Neutrophils were also in a fantastic range – for a kid that we were purposefully suppressing – she had pretty robust defenses.

That day was pretty brutal – we had to suction Laura’s nose every 10 minutes it seemed and we pretty much lived in the steam-filled bathroom. She got saline drops a few times that day and we pushed fluids into her like there was no tomorrow to keep her from dehydrating. That evening everyone was exhausted and Laura fell asleep EVERYWHERE which is normal for babies as far as I’ve heard but Laura is a kid that only sleeps in her bed and nowhere else – it was weird to see her sleeping other places.

That night she only woke every 2 hours or so which was a big improvement and by the next day she was back to her happy self. We were petrified of her getting sick and by about the 3rd day she was no longer bothered and the cold was gone completely by the next week. She had gotten over the cold faster than I would have.

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Day 3 of cold

A week or two later Laura was off her steroid (prednisilone) and with that, we also removed her nystatin (to prevent thrush) and her pantoprazole (to help with he tummy – steroids are hard on the stomach). We were officially down to 4 medications and 2 supplements – it was glorious and completely bizarre to have so few meds.

In a month, we would be taking Laura for her first biopsy. They do them in Saskatoon but for our own comfort, we decided to book her into Edmonton for her first biopsy in case anything were to go wrong. We were really looking forward to seeing everyone back at our old home 🙂

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