Two questions we really struggle to answer are – ‘How are the girls?’ and ‘How are you going?’
It really is a complicated answer and something that can’t be answered in a single sentence response. Most of the time we are torn between being really grateful that nothing devastating has happened yet and being very concerned at just how fragile and susceptible to complications they are.
This was really apparent today when I began to say goodbye to the girls and Ellie’s nurse commented on how well she was doing today considering all her issues. Within 2 minutes of her saying this Ellie stirred and stopped breathing as she began fighting against her ventilator. Within a minute she started becoming blue as her nurse adjusted machines and levels and helped her settle back down.
Ellie has had one to one attention 24 hours a day for the last few days now and I have fondly labeled her nurses as ‘don’t die nurses’. Today I became very aware at just how reliant these girls are on the incredible nurses and doctors who are literally keeping these miracles alive for us. How blessed are we that these strangers spend every minute of the day by the girls bedsides and allocate the most expensive and up to date machines just for them.
We truly are grateful for how our family has been carried through this experience by friends and strangers alike.
Medical Stuff – Hannah is doing really well today and is even lifting her head up by herself during hugs. Ellie has not gotten worse from her long list of issues which is great. The plan now is to get rid of her swelling (using a new drug for that, another type of blood product), then confirm her infections are under control and then add a new long line so she can keep getting the nutrients she needs. She also got another blood transfusion of platelets today so thank you again to everyone who has ever given blood!