Last week Nha had been having such a hard time. Breathing had become very difficult and he needed the help of oxygen to give him some relief. While Nha spent a lot of time sleeping, he looked comfortable and peaceful.
Despite providing Nha with a diet of a high caloric formula, he is not gaining any weight - in fact, he has lost some. Sometimes this happens when a person begins to get closer to the end of their lives and their body begins to slow down gradually. We will continue to do everything we can to keep Nha comfortable, and we still hope that by continuing to feed Nha a good, nutritious diet, he might gain a little bit of weight back, or at least, stop losing it.
Hydrocephalus, and the complications that come along with the disease can be very unpredictable. Most of the children who suffer from untreated hydrocephalus seem to swing back and forth between being stable and being very unwell. The road ahead is unknown - we often have no idea about what could be behind the next corner or the where the next turn may take us. For Nha, we are taking each day as it comes.
However TODAY told a different story. Around this corner told of a happier time! Nha had the best day he’s had in such a long time! He was alert, smiling and spent the morning being kissed and cuddled, read to and sung to and being filled up with lots of love. Nha was given a big thick blanket to keep him warm and a soft teddy bear to keep him company. Today was a GREAT day!
Like for many of our children, we can never be too sure about what will happen next, but we will be with Nha all the way making sure he doesn’t have to go through it alone and making sure that for the time we have with Nha, we will celebrate with him and help him to live life as much as he can.
Our role as palliative care providers is about giving life to days, not about giving days to life.