This week, we will make the transition from administering Theo’s pain medication via his nasogastric tube to subcutaneously by means of a pump. This will be the easiest, safest and most reliable way to control his pain and other symptoms, however it means that in addition to his feeding pump and oxygen, he’ll now have another line attached to either his arm or leg for the continuous administration of medication.
This will make travelling with Theo and repositioning him even more challenging and we are taking these changes in stride. This new pump is likely permanent but we know that it will keep Theo more comfortable, so like every step along this journey, we will learn to adjust and move forward. I know what this change means for Theo and for our family but our priority remains unaffected: to live life. I refuse to let my son spend what little time he has left lying in his crib.
Our lives are remarkably different from that of our friends and families – whenever we leave the house (even if just for a few hours) our car is packed with oxygen tanks, a feeding pump, suctioning machine, medications, extra ng tubes and dressing supplies. Trips also have to be planned well in advance to coordinate with oxygen delivery and nursing visits. Our lives now lack their former simplicity and security but I assure you that there are still just as many moments of happiness. After all, happiness is not a product of our circumstances; it is an interpretation of them.
Mark has returned for the week and we enjoyed a fun weekend before we adjust to the additional restrictions of the new pump. On Saturday, Theo spent some time in the pool for the first time this summer (lounging like a king!) and on Sunday, he celebrated with family at his cousin’s cowboy themed first birthday party. We were blissfully happy to spend these moments in the sun with our son.
Today’s miracle is fun in the sun and moving forward in the face of impeding changes.