Poor Eloise has had a pretty rough week that has involved some rather (logistically) trying hospital hokey-cokey:
- Sunday: (IN and then OUT) – Day spent in St George’s A&E getting shunt adjusted.
- Monday: (OUT and then IN) – Eloise went to bed at home but then woke in the night with a fever and we take her into the Royal Surrey Hospital. Drs. start tests, IV antibiotics and monitor her.
(We post the last blog – Some days are harder)
After the blog was published, Eloise continues to have a fever and the Drs and Nurses struggle to keep Eloise below 40 C and she has D&V. (Mel deserves an award for doing the shift that night!)
- Tuesday: (IN) – Eloise starts to improve but is still weak. Chest x-ray is inconclusive, but a viral chest infection is suspected.
- Wednesday: (IN and then OUT) – Eloise has improved enough to think about discharge but at the 11th hour (or 39th to be precise) her blood cultures start to show signs of a bacterial infection, only for the microbiologist to later confirm it is ‘false positive’ – we are then discharged and go home with additional medicines.
- Thursday: (OUT and then IN) – Get a call from the Royal Surrey to inform us that Eloise has tested positive for an infection in her Hickman line and to come straight in for further antibiotics and more blood tests.
The current plan (which could change at any time) is that Eloise will have IV antibiotics whilst arrangements are made to have her Hickman line removed and then replaced (a minor operation, most likely at St George’s Hospital – either in one surgery or two).
Eloise is also due her 5th round of chemo on Wednesday.
There are also lots of potential variations to what the next week could look like – for now we go with the flow and are exceptionally grateful for the professionalism, thoroughness and agility of the NHS to provide such amazing and responsive care for Eloise.
For those that pray:
- Protection for Eloise: Please pray that Eloise does not start feeling unwell again, her tremors lessen, she doesn’t spike a temperature and that she continues to recover. Pray that the infection in her line doesn’t cause any issues!
- Cannula/bloods: As Eloise’s line is now out of action, Eloise will now need to have a cannula/bloods taken directly out of her. Please pray this goes smoothly and is not distressing for Eloise.
- Protection against muscle wastage: Unfortunately, despite Eloise only being bed bound for three days earlier this week she has suffered muscle wastage and is finding it challenging to walk around as she is weak. Pray for her to re-gain strength!
- Thanks for seeing Anna’s worship: In amongst all the toing and froing to hospital, both Mel and I were able to attend Anna’s first class assembly (a worship service) this morning. This was extremely precious and it was a delight to see Anna enjoying herself so much. A big thanks to Yvonne (Mel’s Mum) who made this possible. The topic of the worship assembly was all about ‘Hope’ – what a divinely inspired and timed topic!
- For wisdom around chemo for next week: There are quite a few moving parts for next week for the Oncologists to consider and factor in. Please pray for wisdom as they make their decisions and for favour with all the medical logistics.
- For life logistics: Not knowing which hospital we will be in and when can be logistically challenging. The next week still involves normal things such as school, birthday parties (for Anna to go to), an inset day and work for Pete.
- For Anna: We are so proud of how mature Anna handles all the constant changes of plan, but it is still hard for her. She misses Eloise every time she goes in.
- For creativity: Please pray for creativity as we look to not just ‘entertain’ Eloise but actively help Eloise develop and grow.
Above all, we are grateful. Despite the daily chaos and constant challenges, we are grateful that Eloise’s last scan was NED, something we could only hope for earlier in the year.
Please pray for other ETMR families we know that are struggling in their battle or have lost their child recently. Our hearts break for them.