Day +41
Good morning every one. Where shall I start today? It’s got to be with last night’s adventure, on getting back to the igloo at 2.00am. I crept in, so as not to wake the neighbours, only to hear running water coming from the kitchen. When I opened the door I was met by a wall of steam….the hot tap was jammed on and steam had filled the lounge and kitchen area, with condensation dripping from everywhere. Panic struck, I must confess, I had visions of the FB reappearing at 2.00am, if the sensors went off again. Anyway, I decided to ring the switchboard and after discussing the pros and cons with the operator, 5 mins later two burly (well one was) security men arrived and switched the water off……….completely!
Anyway, back to today. I was up on the unit at 6.30am and dived onto the new chair, and Ella and I watched some TV, and then she had an impromptu snooze. Time for us all to get some zzzzzz’s in. I sneaked a cuppa and some toast in for Sally and I, but of course the whiff reached Ella’s nose and she was asking for toast too. Back to the kitchen for her milk roll.( We need to freeze her bread and just take a slice out when needed). That went down very well. Time for another nap, in between tummy sessions, and then more lengthy discussions about Ella’s pain relief. The morphine has been further reduced, tonight it is running at 3.00, and the lollies are continuing, thank goodness. Sister Jo said that the aim is to cut down on as many lines as possible to give her a couple of hours of freedom. Do you remember that from a few weeks ago, before things went pear shaped?
The unit is running at full rate at the moment, so all the staff are working flat out. So are we come to that, I don’t think they could manage without parents.
Lunch time came and I tried again with a sandwich for Sally and I, while Ella snoozed. I’m sure that child’s senses are heightened! She knew instantly. She tried a tiny bit of cooked chicken and savoured every nibble. All this appetite talk has lead to the dietician giving us ‘safe’ foods for Ella to have, which won’t irritate her bowel more than necessary. Of course they are all Ella’s favourites……..plain boiled white rice, cooked potato, rice cakes,plain white bread, water and rice milk…..yummy. Not a Nik Nak in sight. So tonight saw us peeling a lone potato and mashing it, with no butter or milk, and trying to persuade Ella that she does like it really. How do you explain to a starving 7yr old that you are doing it because you love them? I must confess that there are other more interesting things on the list, carrots and parsnips, chicken and white fish, if she can tolerate them. It really is ‘slowly, slowly’ as her feeding lines are reduced and her bowel is allowed to work a little.
Dr Wynn came this afternoon and again said that Ella has improved in many ways. We still have a long way to go though. We already knew about the stem cells going in on Friday, and then next Tuesday she is going to Booth Hall Hospital for the day, to have her ‘scope explorations, by an expert gastrologist, to determine exactly where the problem lies.
The physios came as well this afternoon to try Ella walking a little. Unfortunately Ella was ‘indisposed’ the first time and asleep the second time. They did leave a walking frame however, and at bedtime she used it and managed four steps from the bed settee towards her own bed. A good start.
Who else came? Oh yes…the supply teacher…….to make ice lollies. Ella was only vaguely interested at the time, and was more interested in sucking her own pain lolly. I thought she had forgotten them, until at bedtime she asked for one….anything rather than the mash! Anyway, she didn’t like the first one, she didn’t like the second one, she didn’t like the ice pop that followed them…..in fact she was really fed up!!!!!!!!!!!!!!!!!!!! Until at last she fell asleep in a real grump. She’s peaceful at the moment, but I think I can hear mutterings about mashed potato coming from her direction.
We know that we have to work hard at the moment to keep Ella’s self esteem and motivation ‘up there’. She is such a good little girl and she has put up with so much.
Two highlights from today though. We have a new little person in here……Minnie Mouse…..a life sized balloon. Ella’s face lit up when she saw her. Thanks Ian. And the Disney shop donated lots of goodies to the children on the unit, so Ella has a lovely new pencil case full of all sorts, a High School Musical book plus microphone and a gorgeous beach towel! Fantastic….
We are going to finish now and say goodnight .We are just having a final cuppa before bedtime. Hope the igloo is still in one piece and hasn’t floated away on a cloud of steam!
Love to everyone and thanks for all your prayers and good wishes.
Ella, Sally and Annette.xxx

PS Thought you would enjoy these photos of Ella and Shelly. Once Shelly has tried Lizzie on we couldn't seperate them.