Day +138 Weds.
Please excuse me putting the day next to the number up above, but we are so mixed up with days this week, it will help me to keep things in order if I write it down. ( what do they say about ‘ladies of a certain age’ and lists?) Actually, it is now first thing on Thurs morning, and I’m on catch up. Sally wanted to use the computer last night and that can be a very long session!
Quickly though back to all the news about Ella. The Dr’s here are beginning to get to grips with all the testing they need to put into action. Some things will be routine and others related to Ella specifically. Today the pain team are coming very early to change the drug completely from morphine to another called ketamine ( wrong spelling sorry) which works in a similar way, but is used to target bowel pain. They seem very confident that this will help Ella and Sally has agreed to take their advice. Secondly we are off to the heart d’part at 9.00 ( if the pain team have finished) for an echo test, following an ECG yesterday. Then I expect the gastro team and transplant team will have something up their sleeve for layer….we’ll wait and see.
Ella has a lovely new mattress….an air one….a bit like a bouncy castle. We had a visit from the ‘skin’ nurse yesterday, and she decided to err on the side of caution with Ella’s skin and order this for her. The steroids make the skin very fragile after a long time so right now she is floating on a pillow of air.
Yesterday was really hot and today looks as though it is going to be the same. We finally moved all our ‘stuff’ into the parents accom. upstairs. It was my first visit yesterday and I have to say it is really beautiful. The whole place has been designed around parents and family who are long stay. The rooms are lovely, and we even had chocolates on the bed to welcome us, not to mention some complimentary toiletries. There is low lighting, fab bathrooms, newly fitted kitchen and laundry together with a lounge, where families and siblings are welcome. Sam said this morning that she thinks it has been refurbished by Marks and Spencers. This isn’t just any parents accom………this is MnS ACCOM!!!!!
We have had lots of visits from the physios, teachers and play specialists….all of whom have had a frosty welcome from Ella so far today. They are coming back later….thank goodness they don’t give in and are experts in sorting out a ‘grumpy old hector’.
I am going to close now until later and get this posted off.
Bye for now, lots of love and thanks for your loving support and prayers.
Ella, Sally and Annette.xxx