Skip to content
Living with CACNA1E
It’s been almost a month since we came back home after what ended up being our longest stay in hospital. Getting back into our routine has been hard. Trying to fit in the therapies with the tube feeding has been difficult. Managing silent aspirating with out the right equipment has been hard. But hopefully things will slowly get better.
Two months too long in the hospital, Diyanna has had quite the journey and we’re still unsure how long she will stay because it’s now dependent on what supports we have at home to ensure she can safely return based on their findings yesterday. The Broncoscopy confirmed that Diyanna had some form of aspiration. Her lungs have become inflamed and this can only happen because she is always lying down. The infuriating part about this is that it could have been avoided if Diyanna had the correct equipment and modifications to keep her safe. Her lungs are damaged but if we can provide the hyper vigilant care we can reverse it. We have known something like this can happen since she was diagnosed and have been in talks with NDIS for the support she needs but to them such intense care is not required. The reports confirmed that without them her lung damage will become permanent and put a count down on her life. Thanks everyone for the ongoing support and kind comments and messages! Please continue to keep Diyanna in your prayers. There is hope for her yet and we will persist. https://gofund.me/818b4a27 #PrayForDiyanna #supportdiyanna #cacna1e #herlifematters
It’s been three weeks in hospital. It has been the hardest admission for Diyanna and we are still not out of the woods. The chemical burns have complicated things making our stay longer. But today we got some good news. The blood transfusion was successful and the 3rd type of IV antibiotics had got her WBC count down to 27 from 48. Her infection markers are trending downwards. Her liver function is improving. Her pneumonia seems to be getting better. But we are a long way from a full recovery. There is a good chance that Diyanna may never get back to to how she was before. This means her care will become more complex. And with out the right equipment and home modifications we will end up in the position we are in now. But we will take the good news and keep pushing and praying that Diyanna will get better and that we will get the support we need to keep her safe and healthy. #princessdiyanna #cacna1e #pneumonia #sheisafighter #herlifematters #supportdiyanna
Create a website or blog at WordPress.com
bloggers like this: