ONE CHILD...ONE CHOICE

Today was not a good day. Honestly, most days lately haven't been all that good. But today, was a particularly bad day. Don't worry...Caden is okay, at least as okay as Caden has been. This was one of those days when we started thinking about choices again. Choices we are not ready to make. Choices we should never have to make.

You see, I can ask Emily what she wants for breakfast and she will tell me. Ethan will tell me he needs his Tigger because he is tired. Like most three year olds, they can tell us what they want, what they need and to some degree how they feel. At times they drive us crazy vocalizing their needs and more particularly their wants, but they can tell us. They tell us by whining, screaming, begging, hitting, biting and throwing tantrums. That's what they do and as much as it frustrates us, it is a gift that they are able to express themselves.  

Caden can not. Caden can not tell us what he needs, what he wants or even how he feels. Yes, he cries and laughs but even that is inconsistent because he has emotional lability which means he doesn't always have control over his emotions. Where Emily and Ethan can tell us the simplest things they need, my little boy who has to make the biggest quality of life decisions, can not. Those decisions are up to us. We have to make them for him.

Caden needs to go home. This much we know. This hospital stay has done more harm than good. The sick little boy we brought in almost five weeks ago is still sick. In fact, he's sicker with more damage to his already fragile little body. He was scheduled to have his Broviac removed today; the first step in getting home. Last night when the nurse came in to do vitals I noticed he felt warm. He had a fever and when a patient has a central line there is a risk that the fever is a sign there is a central line infection which can be very dangerous. They started him on I.V. antibiotics and Caden settled in for the night.

I was worried in the morning that they would delay the surgery due to his fever but the doctor assured me that the surgery was still going to take place and that his fever only justified the necessity of taking the central line out. Rounds ended and I sat waiting for the call to surgery.

And then I was told the surgery might not take place today. Apparently there was an emergency that would take up Interventional Radiology all day. Not only that but Caden's surgery was then delayed two days and would be scheduled for Thursday. Thursday? Seriously? I was hoping to get Caden home on Thursday.

So needless to say, the poor twenty some odd year old resident who drew the short straw and was forced to tell me the bad news got quite an earful from me. If you live in the Philadelphia vicinity you may have actually heard me. I lost it. I mean, full blown, all out lost it. 

Then this resident tried to "calm me down". She attempted this by saying "I know your frustrated but...". This must be what they teach residents to say to upset parents in How To Be A Doctor 101. I know this because I have heard this line over a hundred times. "Frustrated"...really? I get frustrated when I am stuck in traffic or when I can't get a stain out of clothing. No honey...I am NOT frustrated. This is NOT frustration I am feeling; it is DESPERATION. I am desperate for answers. I am desperate for hope. I am desperately trying to save my son.

You would think the resident would have been smart enough at this point to stop talking and either just listen or leave the room. Instead she decided to say "I understand how you feel." Do you? Do you have a sick child who no one can seem to help? Do you? No, my dear, you do NOT understand. I hope you never have to understand. Four years ago, I didn't understand either.

After I "calmed down", the doctor came in. She sat down and we talked for a while. She told me I was a wonderful advocate for my son. I told her I was not advocating for him, I was fighting for his life. I spoke honestly about how disappointed I was in the care my son was receiving and the medical profession itself. As tears poured down my face, I asked why no doctors ever really touch my son, hold him or try to get to know him. I wondered when they lost sight of why they became doctors in the first place. I questioned the purpose of this children's hospital. I felt that all that truly mattered were the numbers and statistics. My son and the others like him are not numbers, they are children. They are children who dream, who hope and who, despite the hell they go through, somehow, someway, find a reason to smile. When did they get lost by the system? She did not have any answers. 

I then asked, as I held my peacefully sleeping little boy, when would it be time for us to stop? When do we say he's had enough; been tortured enough? When was it time to just walk away? Matt and I talk about this all the time. Not because we want to but because we have to. We want Caden to decide when he wants to stop looking for answers and when it's time to just live the best life with what time he has. It is his life; his body; his spirit that has been through hell. This should be his choice. But we aren't sure if he's already tried to tell us or if he wants to keep fighting. 

I have been with him almost every hour of every day these past five weeks. I have watched him, searched his eyes, looking for an answer; looking for any sign. And I still don't know. 

We have a few more doctors to see. We will find a way to go to Ohio and Illinois to see some of the best doctors who specialize in what we feel is wrong with Caden. The fear in doing this is what do we do if they say there is nothing that can be done. Do we stop looking for answers? Or do we keep searching for something that may not exist?

My heart tells me that time is running out and that we need to allow Caden to smell the honeysuckle, feel the sand between his toes, listen to the peepers sing on a warm summer night and watch the sun set. We need to make his wishes come true. We need to be together as a family for as long as we are allowed to be. That quality of life far surpasses quantity. I truly believe that but what if I'm wrong. What if we stop looking and we miss an opportunity. We would never forgive ourselves.

That's when me head tells me that there must be an answer somewhere. If they could put a man on the moon forty-five years ago, they should be able to, at the very least, figure out what is wrong with our son. But my fear is that while we are searching for answers, Caden never knows what it is like to just live; to live without pain; to live without fear. And that he never gets to smell the honeysuckle, feel the sand, hear the peepers and watch the sun go down.

This doesn't mean we are giving up. We know we can't and we don't want to. We are still hanging on to the hope that someone, somewhere has an answer and a way to help our son. We will continue to search. But we must keep in mind the value of experiencing life and all its wonder. Caden is a three year old little boy and despite the fact that he can not always tell us how he feels, we know he does feel. We know that there is so much for him to see; so much left for him to experience. And we don't want him to never have the opportunity to be a part of it.

And therefore...

Sometimes...

There is beauty in walking away...