Medication , surgery and a “normal weekend”

So let’s talk medication…I’m not talking Calpol, Nurofen or Piriton (although I have all 3 of those too) but hospital prescribed medication of which my house seems to be full to bursting!

Community Nurses Equipment

First we have this little lot. This is the Community Nurse equipment and the iv supplies. Every night we charge the pump for them but literally this is their domain (although I have been known to raid it for steri-strips at some unearthly hour after Herbie’s first neck surgery!)


Then we have the daily oral meds, our domain, given once or twice a day. Some need disguising in juice, others need a drink on hand immediately after and one is bright red, looks like blood and stains everything it touches.


Finally our immunoglobulin replacement therapy kit, weekly for Lily, fortnightly for Herbie, a subcutaneous infusion that goes through the needles into their thighs over an hour. Again administered by us.

This weekend we have administered all of these things, some daily, some twice a day and some just the once over the weekend but amazingly it’s felt like a ‘normal’ weekend. This is our normal now. We managed a cinema trip, playing in the garden, visits to family & friends around all of this and it felt good. Now it’s time to pack a bag , taking the medical supplies and notes from the nurses with us, as tomorrow (Monday) we head back to the JR Children’s Hospital for 7.30am, Herbie is to be starved from midnight tonight and hopefully tomorrow morning he will have surgery to have the last infected lymph removed from his neck.
He still has healing wounds from the three removed just 2 weeks ago and lovely bright scars from the two removed 3 weeks before that! Poor Small, he’s had so much surgery, hopefully tomorrow will be the end of the neck lumps.


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