As life continues moving forward for children with a serious illness, life often gets harder, tougher and things change.
It's hard to watch children slowly start to loose the things they once loved, or not be able to partake in activities they once enjoyed. But by no means does this mean that we will stop trying to make every day count, and continue to help every child find happiness in each day. This may look differently than what it once looked like, but it still counts, it is still important, and we will continue striving to do this.
Nhan is in the late stages of untreated hydrocephalus. In the last 6 months his head circumference has grown at an extremely rapid rate, and things are changing for Nhan. Unfortunately, he has stared to have seizures, and has developed painful sores due to the increasing weight of his head. He is suffering from nausea and chronic headaches from the increased pressure of the fluid which is continuing to accumulate inside his skull.
To give Nhan the best possible Palliative Care, we have had to think long and hard about what is going to be the most effective way to care for this special boy.
We have developed an advanced care plan – a specialized care plan to help Nhan live each day with comfort, happiness and dignity.
Part of this plan explains that it is best for Nhan to have a sponge bath in his bed each day– rather than be lifted to the bath each day which was causing discomfort and pain. This time sponge bathing sick children in their bed – when they are too sick to have a regular bath/shower, can be an intimate time and a time where that child is cared for one on one, shown personal love, and where that child can enjoy the warmth and touch of another human being caring for them.
Since Nhan is no longer able to be lifted from his bed, we have had to be creative; we have found out that we are able to lift him on his mattress – onto the floor – where he can enjoy time with the other children and care providers. This is hugely important for his social and emotional needs and well-being. When he is back in bed, Nhan will enjoy a massage and listening to music - we have discovered Nhan’s personal likes and dislikes for music – currently Coldplay is at the top of his likes list!
Nhan’s care plan also involves high quality wound care to help heal his sores, lots of soft pillows to prevent new sores from developing, along with pain relief to help keep him comfortable.
Things have changed and will continue to change for Nhan, but we will continue to walk beside him and support him in this journey, and be there for him when life gets tough. We will do what we can do make sure this special boy is given the opportunities in his life to experience love, happiness, comfort and dignity.
Thank you all for your continued interest and support of the beautiful children Little Feather Foundation is privileged to support.