Advocacy: A Parent's Gift

Elliot's Christmas illness has quickly turned for the worse. He is now in the hospital, hooked up to IV's and very ill with the super nasty Rota virus.

My daughter and son-in-law are great parents! They take very good care of Elliot and I am grateful for that. However, they are very young and both have very easy going personalities. Confrontation is not their strong suit, so I dread situations like this week. They are still learning slowly how to advocate for Elliot in a hospital environment.

When most of us take our children to the hospital we assume we are taking them to professionals who know what they are doing. My father once told me, "When we assume something it makes an a** out of u and me." No truer words were ever spoken except the words of my Mother, " Doctors have practices for a reason, they are practicing medicine because the don't have it quite right yet."

I am not here to point fingers or to tell you who I think is right or wrong, but I am disturbed over the things that happened to Elliot this week and I hope someone can learn from our mistakes. This is not a bashing of the medical field. I have great respect for doctors, they have saved my life on more than one occasion. I am not bashing hospitals either as they have an equally important role especially for families with preemies. I am here to say that no matter who the professional is or the position of trust they hold there is not a single person who is more important in making sure our teenie tinys get the right care than their parents and families! We cannot leave it to others. Parents are number 1 when it comes to the care of children. We learned this the hard way this week and it was at Elliot's expense I am devastatingly sorry to say. Poor baby, he trusted us to be his advocates and we let him down.

There is enough blame to go around. Doctors, Nurses, the ER, parents, grandparents; you name a person in Elliot's life and they are probably to blame. I thought I was pretty smart, but this week I have never felt so stupid.

Elliot got sick with the rota virus like I said before. My daughter and son-in-law took him to the ER on Christmas day. They gave him fluids and sent him home with instructions to come back the next day. The day after Christmas he was back at the ER for more fluids and sent home again with instructions to come back yet again the next day. Three days and three trips to the ER. Did it ever occur to any of us to take him to see his primary care physician? No! It did not! We are all so stupid! I have no excuse except that our worry and being in the throws of a crisis made us do dumb things including losing our good sense! To make the matter worse the ER never contacted the Primary Care Physician nor did they ever suggest we take Elliot to see him.

When we finally came to our senses yesterday and took Elliot to see his PCP he was dumbfounded that he was never notified that Elliot had been in the ER. Upon further investigation the PCP is pointing fingers at the ER and the ER is pointing fingers at the PCP. Who is responsible for the breakdown in communication? WE ARE!!! His family. We should have have contacted his doctor the next day. We should have asked the ER to call the PCP. As a grandparent I could claim I have no legal responsibility and my children are ultimately responsible, but that would be a lie. I could have kicked them in the butt and made them make that phone call. I did suggest it. A suggestion in a crisis situation is not enough. My children were so numb with worry that they needed to be smacked with a 2 X 4. and I was too concerned about interfering and stepping on their toes.

As a result of this "comedy" of errors there was a total breakdown in communication and because of it a poor little baby was in horrible pain and suffering for three days until the people he believes will take care of him, the people who are suppose to take care of him got it together enough to get him into the right hands to help him begin to feel better. It turns out that the first words out of the PCP's mouth when he saw Elliot were, "This baby needs to be admitted to the hospital." and "Had I known he was this ill I would have admitted him on Monday!"

Today I looked up the definition of advocate - it means "to speak, plead or argue for; a synonym of support; one who pleads in an others behalf, an intercessor." Elliot doesn't have a voice to speak in his own behalf, so we have to be brave enough and responsible enough to do it for him. We cannot leave it to the professionals. As much as we might like to we cannot abdicate our role to another. I look at Elliot and I am stunned by how brave he has been in his short little life. In 18 months he is so much braver than I will ever be. I owe it to him to at least try to follow his example and truly be a worthy advocate. The best gift I can give him is to be a good support to him and to his parents until they learn to be advocates in their own right. I promised myself yesterday that I would never be guilty of letting him down again.

More articles are coming about advocacy by those who know how to do it. Stay tuned...maybe we can all learn something together!