This is how our day ended today:
Ryleigh with her rosie cheeks. She is starting to show the side effects of prednisone – her cheeks are puffy. She hates that but I think it makes her look healthier!
Ryleigh chooses to do artwork especially painting to relax as she had another busy day.
The morning started with bloodwork early in the morning. They are checking her levels for clotting and her basic counts especially to see if her white blood cell count and liver enzymes have decreased.
Then she had to go and have an ultrasound of her abdomen. It continues to be distended and there are dark blue veins all around her abdomen. Thankfully, her ultrasound did not show anything. Which does not explain why her tummy looks the way it does. But no borrowing trouble here…time will tell about her tummy.
Ryleigh's afternoon was spent getting a blood transfusion. This did not take much effort on her part she just sat and watched TV while playing on her IPAD. The doctors came by and said that the blood transfusion will help her get some energy back and get her body back on track for getting better. Her cheeks are much rosier tonight but she is still very fatigued. She had a long nap from 5:00-7:00 but that is good for her.
Tonight Ryleigh had one of her IV lines taken off. Her heparin is now going to be injected subcutaneously (underneath the skin). They placed a port in her leg to help reduce the number of pokes that she will have. She will need to have two injections a day for 3-6 months. This type of heparin allows for more freedom as she is not attached to an IV and does not need daily blood tests.
This is a picture of her "port":
We have spent 4 weeks in hospital – it has been quite a journey and the unknown about what happens next with Ryleigh’s health can be stressful. However, I learn to take each moment as it comes, NOT research too much on the internet, and try to get as many cat naps as possible. Sleep in the hospital comes in bits and pieces. The maximum number of hours that I have slept without being interrupted is 4 hours – much like when my girls were wee babies. I am getting used to it and working on making sure when there are quiet moments to rest.
Looking forward to hearing what all the teams have to say tomorrow as they are meeting together to discuss Ryleigh’s progress and further plans to get healthy.