Home care

Margot chats to Grandma Annette as she receives an IV infusion of antibiotics this morning

Margot chats to Grandma Annette as she receives an IV infusion of antibiotics this morning

The latter part of Margot's Music therapy session was interrupted by an impromptu tea party

The latter part of Margot’s Music therapy session on Tuesday was interrupted by an impromptu tea party

Today is the second day since Margot left Kingston Hospital and returned home.

Margot walked out of Kingston Hospital in a far better condition than she arrived. During her stay, the team at Sunshine Ward were lifesavers (literally) and the transformation in her condition and well-being from Saturday night when Margot’s vital signs were weak and all seemed lost is astonishing.

There are two primary threats to Margot’s life: bone marrow failure and infection. Assuming the recent infection has been overcome, we are still left with the inescapable fact that Margot has a nasty type of leukaemia and the overwhelming odds are that the disease will eventually catch up with her.

For the time being, in herself Margot is now “well” again and we are enjoying her being at home and hope to continue to do so for a little bit yet.

However, being at home with Margot in this condition is very different from before because the intensity of care required has stepped up considerably.

Oxygen - a 'just in case' measure

Oxygen – a ‘just in case’ measure

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drawing with Oscar

Until the end of this month (NB I just caught myself starting to plan for a week or more !) Margot requires four Intravenous (IV) antibiotic infusions, three times a day. The teams at Kingston Hospital & our community nurses have worked successfully to provide daytime home visits by nurses to administer the IV meds and also to find night time cover as well (which will allow Margot to receive meds around the clock and Vicki and I to sleep).

So more meds. And there’s now more equipment too.

This is ‘compromised living’, but we feel so grateful to have Margot back home and clinically well.

It feels like we have all been given another ‘second chance’.

25 September 2014