We had such a wonderful Birthday celebration and Christmas with Daisy! She was soooo excited just to be in the ambulance (that's how weeks in isolation gets to you, I guess prisoners must feel the same when they have a court appearance!) and her little face when she realised when she was at Chase.... it was a picture. The picture above is Daisy getting ready to leave the ward with our wonderful Chase friends Gemma and Rachel. If it wasn't for Gemma and Rachel we would not have got to Chase for her birthday or Christmas, they organised everything - training all the relevant staff on how to do Daisy's TPN and infusions, liaising with the ward, sorting out presents for the children and Daisy's birthday party and even booking a babysitter for Andy and I to go out for an evening during our stay.
Getting stuck into the "In the Night Garden" DVD box set....
Opening presents with big sister Xanthe.
I will post more pics but I need to download the memory card from Andy's camera, and as I said, at the moment there are just not enough hours in the day!
We just had the best time at Chase - Margaret the chef cooked wonderful veggie food for us as well as Daisy's birthday cake (which Xanthe decorated), the nursing staff took care of the TPN, the boys alternated between the Xbox and the computer room and Xanthe created a production line of Christmas presents and cards in the art room. I caught up on some sleep and Andy caught up on some TV! Daisy was in her element, she was able to sit in the high chair with us for mealtimes - something we have so missed at home, she loved the sensory room and joined Xanthe's craft sessions in the art room. Seeing her at Chase made us remember what a bright little girl she is, she just loved all the social interaction and attention. All the activity meant that she depleted her blood sugars a bit quicker than usual and we got through a couple of tubes of hypostop when her sugar levels dropped. It's something we are going to have to remember when she is back on her feet.
Christmas day was magical - Santa had left snowy footprints down the corridor and there were big sacks of presents outside all the children's rooms and even our room! Daisy has got the hang of present unwrapping and joined in with all the general mayhem with the children. After breakfast two fire engines arrrived and Santa got out of one of them together with more presents! Jules ran a mile - inspite of his gun obsession and violent tendencies he is a wuss at heart and is terrified of Father Christmas! Daisy loved the fire engines and the firefighters were very taken with her. They sprayed the gardens with white foam and turned the outside into a winter wonderland, it looked fantastic.
We returned to the hospital on boxing day and everyone commented on how well we all looked - I definitely benefitted from some sleep. Daisy has been in fantastic form since Christmas and the best news of all was that her blood cultures have come back clear which means that (for now) we have beaten the bugs in her bloodstream. She still needs to be on her antibiotic infusions (including a dose of Vancomycin which would normally be prescribed for a 70kg adult according to the pharmacist!) until her port is removed. This is the sticking point - our friends at Great Ormond Street offered us a date of 23rd December to take the port out and insert a picc line temporarily. As I had turned this down Daisy now has to go onto the waiting list, even though I told them not to offer us dates around Christmas week. It would have been so good if they could have taken her in this week as Andy is off work and childcare is easier but that is not looking likely. The doctors at the local hospital are liaising with Great Ormond Street to try and get things happening, until she has the port removed she cannot start on the new immunosuppressant therapy that her Gastroenterologist wants to try and after the port removal she needs a series of other procedures which are all being delayed.
Our focus for the new year is to keep pushing to get things in place for home TPN for Daisy. I have seen a lovely adapted special needs cot which would be perfect for Daisy as she needs a hospital cot at home now but this one doesn't look too institutionalised, we have applied to a charity to fund it. We are also looking into installing some sensory lighting into her room as she loves the sensory room at Chase and at her school so much. We will get her room decorated in the new year so that at least we are all ready to go from our end.
Anyway, it's new year's eve and we are actually going out tonight. Our friends are having a child friendly party, so Andy will come home from the hospital at 7.30pm and take the boys and I will go up to the hospital for the late shift and go to the party at around 10pm. We'll toss a coin to see who does the early shift tomorrow morning!
I know 2008 has thrown us a few unexpected suprises but it has also given us many things to be happy about - Theo started at the London Oratory and is loving it, even the tube journey does not phase him. Xanthe is doing brilliantly at school, she is involved in so many activities both during school and is doing well with her Flute and recorder playing, Jules seems to have clicked with school now and his reading is coming on so well. Daisy was such a hit at her school and we can't wait to get her back there. Inspite of everything going on Andy and I are so lucky to have four such wonderful, unique and happy children, it's something we will never take for granted.
Thanks to all our family and friends for their cards, messages and presents over Christmas and all our best wishes for a happy, healthy and successful 2009!