Bede has found his way to his joy again. We remain depleted but Bede has been reclaiming himself which has given us some sweet relief.
Bede needed surgery to explore the source of his internal bleeding, had multiple biopsies and had a special feeding tube inserted into his stomach which is something we’ve been planning on for a while. My understanding is that he is one of two children in the hospital, likely the state, that has this tube. The purpose of the tube insertion is to give him a better quality of life.
Bede was off pain killers in under18 hours and smiling the next day. Like a champion.
The bleeding stopped.
Then slowly the vomiting began. By three days ago it was the first time we had seen Bede in pain in a long long time. I was once again in the position of tearfully saying ‘there is something wrong with my child’ and having people hear that, believe that but have no answers.
Well we found our answers and Bede is heading back into surgery today to HOPEFULLY correct a complication from the last surgery.
Bede has been reclaiming himself. Slowly the requirement for sedation was easing. He laughed more freely. He is tolerating being upright again. He plays. He is happy. Then a unsoothable surge of pain interrupts him. It is unlike the agitation of the last few months as soon as the pain passes he is back and wanting to play music.
I am writing this on my way into see him before the surgery. We’ve just been on the phone together and he is laughing big belly laughs in his daddy’s arms.
I am writing this in the hope that you will all get behind Bede today. Send him love, prayers and positivity. Every time I reach out to you all asking for love and prayers and good vibes he turns a corner. He is fighting the good fight with peace and love and this bubbling infectious happiness that is so filling. The melody to my soul. When people play with him they laugh or cry. His light is bright.
He deserves for this to work. Let’s bring Bede home. Let’s carry him there on a wave of happiness.
Bede may be small but he is mighty.
Let’s bring Bede home.