When the community nurse visited again at the end of last week, Jessica’s sats were down again, but she did have a cold and a slight cough which was a possible reason. Once again, after discussion with the cardiac liaison nurse, we decided that I would monitor them at home over the weekend and the nurse would call back today. Over the weekend, they picked up once more and when the nurse phoned me this morning, I reassured her that all seemed fine.
Ten minutes later, I received a phone call from Jessica’s preschool to say that she was quite subdued and looked blue, as though she had been playing outside in the cold and needed warming up – except she hadn’t wanted to go outside. I headed straight over and agreed that Jessica did look bluer than normal. In view of the reduced sats over the last couple of weeks, I called our community nurse and asked if we could come up to the ward and get Jessica checked over.
Open-access is a wonderful thing at times like this. Within an hour of preschool having called me, we were on the ward, with Jessica being given oxygen. She was also running a temperature, which thankfully has dropped since she had some paracetamol and so far has stayed down. She was a very brave girl while the doctors were taking blood from her (never an easy job and always requiring multiple attempts) and didn’t cry at all, bless her. She’s also coping well with having an oxygen mask on her face – helped, I think by the fact that Daddy sleeps with a CPAP mask on due to having sleep apnoea. Jessica keeps telling me that she has “a mask just like Daddy has” which has been very helpful when trying to make sure she keeps it on!
It’s hard for Sophie, bless her, who was quite happy to come and sit with Jessica for a while but then couldn’t understand why Mummy wasn’t coming home with her and Daddy – and hard for me too to have to be without one of my babies overnight. The plan for now is to continue to monitor Jessica overnight, hopefully try and get her back off the oxygen and if she spikes a temperature, to take blood cultures and start her on antibiotics if needed.
Hopefully we’ll be back home again as soon as possible. I’ll post another update in the next day or so.
Oh Louise, this must all be so hard. But it does sound brilliant that Jessica receives such fantastic care and could be on the ward so quickly. I hope that you and Jessica manage to get some rest tonight and are able to go home soon. It must have been so difficult saying goodbye to Sophie tonight. Hugs Lucy xxxx
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