One of our most basic rights is the right to be nourished, this is pretty easy for most people. This should be easy for Isaac, but it is not.
Last month we placed our normal reorder of Isaac’s medical supplies, including an order for his feeding tube. This tube is a very specific size, as it has to sit in just the right place in Isaac’s intestines. The tube we received was twice length it should be, it was not one we could use.
Since that point we have called his medical supply company (Corum) on a regular basis in order to get the appropriate feeding tube. Each call requires several minutes of hold time, followed by several minutes of explanation on our part, followed by several more minutes of hold time…… you see what we are dealing with. We were actually lied to twice by representatives from this company, they told us a tube was coming when we in fact is was on backorder.
What we really need Corum to understand is that when we order these supplies it is because we NEED these supplies. We hate having to rely on others to feed our child, but we do. When you tell us something is “on it’s way” we would like to trust that it is, even though more often than not lately it is not.
Our ability to keep our child alive rests on you, and the supplies we order from you each month. My husband and I have full time jobs, and two other children that we love to spend time with, when we have to call you repeatedly for items that we should only have to make one call for you are taking time away from our other responsibilities……. and quite honestly you are not doing your job.
As Murphy’s Law would have it, yesterday Isaac’s feeding tube broke – and we do not have a backup. We were lucky and we found a local family willing to share their child’s spare feeding tube, so Isaac was taken care of. Had this not happened he may very well have ended up in the hospital on IV nutrition until a new tube could be found. We should not have to take a tube from another child to feed our child.
My final words to Corum would be this…… Our Isaac is an incredibly happy, outgoing little boy who has fought hard to survive. He deserves the best you can give him.