Best week yet

We have had the best week. I am so proud of Raphaela and her fighting spirit and how far she has come in her short little life.

She is now down to three drugs. Dobutamine, which is helping her heart muscle, Fentalyn, which is a sedative and Heparin, which is helping resolve the clot in her leg. Once the clot is gone, the heparin will be taken off. As for the other two, well they are slowly being weaned although the doses are pretty small as it is. She is also given aspirin down her NG tube which helps keep the blood thin so there won't be any clots in her shunt.

As for the CPAP, this too is being weaned. If she can't come off it, it means that her aorta is still a bit narrow and she will have to have another surgery before her BCPS operation. If she does come off it, well I for one will be jumping for joy as it means we can move up to 7West.

And now for the super SUPER news.. I GOT CUDDLES!!!!!!!!! Can you tell I am excited?? LOL Raffy also gets to wear clothes now and has graduated to a regular cot as she doesn't need the heatlamp above to keep her warm anymore. She is up to 34mls of EBM every two hours as well. And her voice is slowly coming back which is fantastic. And did I mention that I got cuddles?? :)

I also got to spend two nights at home with Fred and the kids. One of the nurses here lives down in Rosebud so I can grab a lift with her when I want which is great. It was really good to spend some time with them as I have really only managed to make flying visits so far. I did fret a bit about being away from the hospital and Raffy though and called a few times to make sure she was alright. Tadhg had his first parent/teacher interview and is doing spendidly at school which was music to my ears and made me feel that we made the right decision by sending him this year. As for Clementine, she is just as cute as ever although she could lose some of the 2 year old attitude she has acquired.

S&P news: There was an Orbit in the parents lounge of the PICU today. I have never seen one IRL before so I stopped and had a good look at it. I think the owners thought I was a bit weird though. Can't say I really liked the look of it to be honest and I was a bit embarassed to ask if I could take it for a push to see how it went.. LOL

Thank you to everyone for all your support and well wishes. Fingers crossed that the next time I post, I will have some more fantastic news for you all.