Today has been a bit of a boring day. Not a lot has happened apart from William having his heart monitor taken off. He can't leave the hospital till he has 24hrs off oxygen. He was doing well today but seems to have trouble when hes sleeping keeping his oxygen levels at an ok level. We're hoping to meet with the community nurses tomorrow to discuss the option of having home oxygen because hopefully that will shorten our hospital stays. They can be reluctant to give you home oxygen and monitors because they worry you won't take the child to hospital when they need it beause you can cope longer at home but me and Steve know William and the system well enough now to know when we need to be in hospital. We'll see what they think and say and take it from there. I think everyone agrees that we're spending more and more time in hospital and we need a more sustainable option so hopefully we can figure something out. I'm pretty sure Steve and I should be made honoury nurses after this!
Spending as much time as you do on the ward you really start to get to know the nurses and some of the doctors. It often feels like a strange little community on the ward with people coming and going all the time. We do of course have our favourite nurses and doctors and they make our stays so much better.We are so incredibly grateful for having such an amazing ward to go to.
This afternoon Steve and I got a bit of time at home together while nana and grandpa watched William, and we went for a romantic KFC! It was nice to do something together and to do something 'normal'.
I had a really good chat with the ward play specialist this morning. She bought William a swing chair to try out and said we could bring in his high chair seat so he could spend some time sitting up rather than just lying in his cot and on us. She also helps us to know where we can get good toys for William and can bring stuff out to our home to try. She is hoping to take us on a music therapy day at a local hospice later this year which would be great. She's really nice and it was really lovely watching her interact with William. She obvisouly has a lot of experience working with all different types of children and she knew exactly what to do with him and was very sensitive asking how best to interact with him and William seemed to respond to her, she definitely got a smile and some noises from him. Watching him with her and watching someone interact with him with so much confidence and joy made me well up with pride and brought good tears to me eyes. William might not do a lot but any thing he does do is so precious to us. Yesterday I propped him on his side in his hospital cot to play. He usually lies really still when on his side but for some reason yesterday he seemed to enjoy it and kept giggling. Also when he gets sleepy he often lies with his arm in the air as if he wants someone to hold his hand so we do and we stroke it to help him go to sleep. And yesterday he had his arm in the air and i put my mouth against his hand so he could feel me talking to hin and kissing it and he kept grabbing my lips. I'm pretty certain all of these things are unintentional but they are small ways of him interacting with his environment and each of those things he does is spectacular. He also got told yesterday by the ear nose and throat doctor that he had cheeks to die for! And we figured he would know considering how many cheeks he must look at.
I also found out today, William certainly didn't inherit my lack of patience. The ward was very busy today with people coming in for day surgery. At lunch time William was trying to go for a nap but it was so noisy he was having a bit of trouble nodding off. Every now and then he would nod off only to be woken again by someone doing something nearby. While I got more and more frustrated that the poor little boy couldn't get to sleep thanks to the billion people buzzing round the bay, he just took it all in his stride, didn't complain once and eventually just nodded off, and then slept for about four hours!
So we'll just wait and see what tomorrow brings and hope we get some better solutions so we can come home and stay home!
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