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After our update yesterday we heard from a colorectal nurse. She was calling to inform us the doctor was requesting more photos. While they had indeed asked for up close angled pictures the doctor was having a difficult time with the size and spatial relationship of everything. They requested that we include a reference object for size comparison as well. We do not have the supplies to continue to do these modeling sessions on a whim. We struggle to get by each month as it is. Fortunately we had to change his bag last evening enabling us to get them the photos. While taking these photos, we noticed a new lump on the top of the stoma, where it meets the skin. We made sure to let them know that now another lump has formed. A short time ago we received an email from the colorectal doctor himself. It read as follows:[…]
“Nothing to worry about – that area will be excised at the time of colostomy closure.”
Great! That is fantastic news. The mystery is solved. Why is it that we do not feel very confident with that answer? We have a few questions for you Doc. What are these lumps? You must know what they are to be so confident that there is nothing to worry about. Are these common to find on colostomy stomas? The fact that a new one has formed in the past few days doesn’t concern you? What should we do if they change or more appear? Finally, you are assuring us that these will not be causing us any issue between now and the colostomy closure that is scheduled three months from now?
We have passed this information on to the FA team and are awaiting word if they are satisfied, to some degree with this or want to proceed with other options. To us really at this point it is very obvious that the colorectal team from the beginning was not interested in looking at these lumps. I spent the first 15 minutes of the initial conversation defending our position and explaining how no one will accept responsibility for Elias colostomy. Only then, with the backing of Elias FA doctor did they move forward with the photo option. Given the way in which this has been handled we wonder if we would feel confident now were we to be seen in clinic at this point. It is very frustrating and we are growing weary of having to fight tooth and nail for everything. The fact that they had to even ask for more photos should have been enough to say, lets just bring the child in or schedule an appointment. I’m not really sure why they never bothered and I doubt we will ever know.
When a change occurs in a medically complex child you never take that for granted. There is so much about Elias that baffles his doctors, so why should this scenario be any different? In over 2 years there have never been lumps and then within a few days multiple ones appear hard as a peanut and without explanation. Do we feel as though this is something horrible, No. However, if we do not treat changes with caution and respect then found out later it was indeed something, we would never forgive ourselves. Even if it turns out to be the silliest of concerns at least we know and can move forward. It all boils down to principle. Even if the colorectal doctor is right and confident about it being nothing of concern, why tell us what it is, that is all.
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