Eloise recovered symptomatically from Flu A last week and by the weekend was doing well again. Thank you to those of you who prayed. Eloise actually had the non-live flu vaccine (a jab) a couple of days before she was admitted to hospital with flu, so the jab might have just helped her get over it a bit quicker (even if it didn’t prevent her from getting it. We also know it wasn’t a positive test because of the jab – as it was non-live vaccine).
We were therefore really grateful Eloise was able to have her port removed at St George’s on Tuesday, as planned. Eloise has been surprisingly sore with the scarring from surgery (the surgeon said it was unusually tricky to remove the port), but Eloise is happy and active. Unfortunately for 24 hours post-surgery Eloise started having a lot of seizures (still short ones), but a sudden large increase. The working theory is that she had a response to the general anaesethic (GA) – which is slightly odd as she’s never had a reaction before (and she’s had between 65-70 GAs before and they have generally had the opposite impact, reducing seizures). But it just shows we can never take anything for granted. One for us to watch for future GA’s – the next being planned for her next MRI at end of January…Despite this, we were grateful Eloise recovered from the seizures and didn’t need rescue medication. She is back to her happy and very cheeky self! A true warrior and champion. 😊
We just had our last community nurse visit (unless her surgery scar doesn’t seal over the weekend, in which case we might get an extra final visit) which feels like quite a marker in the sand at the end of 2022. The Children’s Community Nurses have been fabulous over the past 2 years – caring for Eloise and us all and trying to visit at times that don’t interfere with Eloise’s/our life too much. In a very strange way, we will miss them – and are very grateful to them.
Eloise unfortunately missed her ‘Angels’ Nativity as it was at the same time as she had her port surgery, but Rydes Hill School were fantastic as ever and let me come and watch the dress rehearsal (Eloise wouldn’t have known the difference!). A really special memory and Eloise seemed to really enjoy it.
We are so grateful that we are able to celebrate this Christmas as a family. We will never take it for granted. Angel nativity shows that Eloise statistically should never have been in, Christmas parties, and being together and enjoying all the fun of Christmas – what a blessing.
For those that pray:
- Give thanks that Eloise’s port was removed
- Give thanks that Eloise recovered from the flu and is back to her well and happy self
- Pray for seizure control – for continued wisdom on how best to treat going forward
- Pray for protection from infection over the Christmas period.
- Pray we don’t need any unplanned hospital trips and that Eloise (and Anna) can have an extra special Christmas this year – with lots of smiles, laughter, joy and peace