We’ve been silent for the past few weeks but not because it’s been quiet – it’s been an extreme winter infection hospital admission yo-yo.
Eloise has had 4 admissions into our local hospital in the past 6 weeks or so with infections.
3 weeks ago Eloise had a few days/nights in hospital following another fever and poor observations (racing heart, heightened blood pressure and low O2). Tests showed she had 2 viruses (one being RSV – which is pretty nasty), plus a secondary bacterial infection in one of her lungs. As a result she was pretty poorly!
She had a few days of IV infusions and then had oral antibiotics back at home. Whilst in hospital she had a chest X-ray which coincidentally showed that her port had ‘moved down’ and should be removed sooner rather than later.
She recovered from this bout of illness and was then doing really well. The best she’d ever been for 2 years, which is really encouraging.
This ‘well’ period lasted about 1.5 weeks, during which Eloise enjoyed nursery and has also done a few sessions of intense physio to try and get her physically stronger. Unfortunately her short seizures have continued averaging about one per day, but are significantly worse when she’s poorly. We have had many discussions with consultants about how to deal with this and this is a continual work in progress, but for now nothing significantly will be changed in terms of medication etc. We still want to wean Eloise off sodium valproate (her final remaining chemo drug – which also happens to be an anti-seizure drug) because it’s been causing Eloise brain fog. A very tricky balance. This continues to be a very, very long road – as we all know, Eloise’s situation is a very complex case!
Unfortunately after a meeting with the epilepsy consultant and neurologist yesterday, Eloise spiked another temp and had poor obs again. After another night in hospital and more tests this morning it’s shown that Eloise now has Flu A. We’ve been sent home but have to go back in if she deteriorates. Without being able to take Calpol or Ibuprofen it’s a bit brutal for immunocompromised kiddies to ride out all these nasty infections.
Among this, she/we’ve also had Eloise’s EHCP review and accompanying assessments (speech and language, physio, OT etc) with the support of Eloise’s fabulous school. We are hoping to pull her back a year so she has another year of nursery – hopefully with less time spent in hospital and more time to be a ‘normal’ kid and catch up with some of her development. She is making great improvements with her development (she is a VERY determined learner in all areas) but each infection sets her back and she still has a long way to go on every front. It feels like a constant game of cat and mouse. If you ever wonder what parents with complex needs kid spend their time doing, all we can say is it is very full-on, unpredictable, chaotic, intense and with little/no respite… Everything we do has to be so ‘intentional’ and worked through.
In theory, Eloise is due to have minor surgery on Tuesday at St George’s to have her port removed – but we will have to see how she gets on with fighting off her flu A to see if she is well enough.
For those that pray:
- Please pray for protection for her when she has these infections – such as flu at the moment. It impacts her neurologically. The first symptom is her shaking/tremor and her seizures significantly worsen.
- Pray she recovers from this flu and can somehow have the surgery on Tuesday (she needs a GA and therefore needs her airways to be ok).
- Pray for seizure control! Give thanks that she has a great epilepsy consultant who champions Eloise’s cause. Pray for wisdom on the best course of action in the short, medium and long term. The seizures seem to be caused by structural changes, such as the calcification in her brain.
- Pray for energy. The regular but unplanned hospital admissions and subsequent efforts to regain lost muscle mass and strength (and re-potty train) absorb a lot of Eloises and our energy. It has certainly felt very unpredictable and chaotic these past few weeks – trying to have a “normal” life and keeping ‘the show on the road’ whilst being in and out of hospital is hard. Pray for additional resilience, strength, energy and peace for us all as a family.
- Give thanks that on the BIG front of fighting ETMR brain cancer Eloise is on the winning side! Give thanks for the care that Eloise continues to receive from so many doctors, nurses and numerous health professionals. We are incredibly grateful.