We’re back home in Portsmouth!!!!!

After 60 days of being in isolation on Fox ward, Anabelle was discharged from Great Ormond Street on 21^st September.

7.00 am medicines!!!!

Prior to leaving GOSH we had training on how to do her medicine as we have to provide medicines at 7.00am, 12.00, 3.00pm, 5.00 pm and at 10.00 pm.  Not just one medicine mind but a whole bundle of them!!!  In addition we have to make sure that Anabelle takes in at least 1000ml of fluid each day which is a mission as since having mucasitis she will not even looked at a bottle so all fluids are currently been given into a pump machine via her PEG  - an overnight milk feed of 480ml, then during the day two lots of  water bowless providing the remaining of the water. Our first week at home took alot of getting used to.

Even though we are home we are in semi-isolation, which means we are unable to take Anabelle anywhere public i.e. shops, restaurants, pubs; anywhere where there is people which pretty much means everywhere. Our only outlet is to take her for strolls down to the beach.  We also have to be very very careful with people coming to visit, which being social people as we are is taking time to adjust to.
However all that said, Anabelle is coming on leaps & bounds, her tantrums/irritability has now calmed down and she is smiley  again, enjoying being on her feet & even giggles daily, which is a sound we didn’t hear for a long time – this all makes being at home so much easier. She is becoming more like her old self each day.

On Mondays, our community team comes to the house to change Anabelle’s Hickman line dressing & take bloods.  We also still go to Day Clinic at Great Ormond Street which gives us a chance to pop back onto Fox Ward to say hello.

Our time on Fox Ward had some high & lows, starting with the highs; we made some lifelong friends & really had a laugh and when you’re in the situation we were in you really need that.  All of the nurses on Fox, also made our journey so much easier, by not just only doing your jobs caring for Anabelle but again having a laugh with us. Coffee being brought first thing in  the morning is a real bonus.  A big thank you as well to Adele (play specialist), student nurses & volunteers who everyday came in and played with Anabelle so we could go & have lunch together most days, again when you’re in isolation to go and get lunch together was important for our relationship & sanity!! The jobs all these people do is really unbelievable when you consider what they have to face on a daily basis, which brings us onto the lows. We were very unfortunate that it was one of the worst times they have ever had on Fox Ward as four of the little ones lost their battle far too early,  our hearts go out to the families of Fiz (11), Rosanne (9), James (20 months) & last but no mean least beautiful little Richard (10 months).

On more of a positive note, we would like to congratulate Theresa & Shane on the great news of your impending pregnancy – Thank you for your support via this blog on your experiences & please keep us up to date when Corey s brother arrives.  Next year we will definitely have to catch up.

Anabelle  has been on such a massive journey  and although we know she is not out of the woods just yet, her progress has been amazing and we look forward to seeing her progress each & everyday.