"The best and most beautiful things cannot be seen or touched-they must be felt with the heart." Hellen Keller

Wednesday, November 2, 2011

The decisions we make

I probably shouldn't even talk about this....but I have to. You see, right now, is probably one of the most peaceful and happy times in my life. I just feel like everything is good. My "worry-meter" is at an all time low. I'm just so stinking happy. HOWEVER (there is always that however) there is one thing that looms in my mind. At night, when it is dark and I am laying in bed and it is quiet...it crosses my mind....no....it consumes my mind and I feel like the only way that I can get it to leave, is to write about it. I mean, no holds barred, truthful, balls to the wall writing! So I'm gonna write about it in hopes that I can finally LET IT GO!
For those of you who do or don't know...here is the backstory, short version. September 17th Bryson is born and rushed to hospital and seriously sick. For almost two weeks before his birth I was stuck in antepartum because of low fluid and I HATED IT. I missed my boys and Mark so much! So here I am thinking I am going to spend a few days at the hospital and instead I get a c-section and leave the next day to go to Dallas for God knows how long. Needless to say I was sick about leaving my other two boys at home. We wait for surgery, have surgery, wait for his chest to be closed, chest is closed and we are told, "he will be up on the 8th floor and headed home in a couple of weeks!" Ok, I can do that! WHEW! Fast forward to the week before Thanksgiving. We are nowhere near going home and Bryson is declining rapidly, and suffering terribly. I am told over the phone by a doctor that, "he will not survive this....he is just too sick....perhaps you should think about turning off the machines and letting him pass." I talk to nurses (at least two) who agree. They say even if he lives his life will be terrible. He will have a trach, feeding tube, and we don't even know if his brain is ok after all the trauma. His life will be hospital stays and horrors that no child deserves. We have a care conference with the team to discuss what to do. We meet Dr. Koch.....we don't know him from Adam but he knows my son's medical history and he says to me, "give us some time, let us try some things". Mark and I have a lot of discussions about Bryson's life, our life, our other son's lives, fears of Bryson being a guinea pig, but mostly his pain and suffering. Then, we made a decision that I think shocked everyone involved. We decided to go home for a while. This was not a decision that was easily made and many people had problems with us leaving and comments were made and scars were created that will never be healed. Let me start off by saying this.....sometimes, now, I regret it. I feel like I abandoned my sick baby. I understand why people questioned our decision because if I were looking in from the outside I would say, "I would never leave my baby!" Sometimes....I regret it. I think part of the reason why is because people judged us so and I think about what they said and I question my decisions. But then, I remember, I WAS THE ONE WHO WAS ON THE INSIDE! Do you know what it is like to spend every waking moment of your day watching your own child slowly die????? When you question me and my decisions I want you to put that in the forefront of your mind. This was our reality, EVERY SINGLE DAY! Come in first thing in the morning.....Bryson is asleep not because of fatigue but because he was on enough pain meds to kill a horse. He is on the ventilator and his mouth is hanging open and his neck is turned to the side. Bright, colorful toys prop up the breathing tube. The machines beep constantly ALL DAY. There is a sticker with writing on it that covers his entire forehead. His legs splay open because he is so snowed he can't hold them up in any fashion. He has two pigtails tubes coming out of the side of his chest. There are two bigger chest tubes underneath them, which by the way, are barbaric-looking. He has a dialysis drain coming out near his belly button. He has a picc line coming out of his arm, various IV's in other sites. EVERY inch of his body has something coming out of it. He is swollen beyond belief, beyond belief. So swollen in fact that his face is speckled with broken blood vessels. He can't even open his eyes if he wanted to because they are swollen shut. As soon as we get there we hear morning rounds where they again discuss that we can't do anything much today because of the extra fluid. "We will change his diuretic dose and see if we can get some of that fluid off", "Oh and he has an infection somewhere so we have to culture every single tube coming out of his body and every orphus so we can find the infection and until then everyone coming in has to wear masks and gowns". There were many days I couldn't even touch his skin! THIS was our reality (or worse) every, single day and so yea, I wanted to leave. I couldn't take it anymore! I couldn't watch him die anymore! I needed to hug my other kids and love on them. No one knows this but before I finally made the decision to go home for a while...I thought about running off, leaving and disappearing where no one could find me. I had never felt so crazy and out of control in my entire life. I missed my kids so much and the thought of Bryson dying was more than I could bear and I felt so guilty for even wanting to leave but I had to!!! And so I did! it isn't like we LEFT him at the hospital forever but we took a break. We were gone Monday-Wednesday and came back on Thursday or Friday and stayed all weekend. And the doctors and nurses strongly encouraged us to leave. And the nurses there LOVED Bryson. He was in CICU and had medical care 24/7 but it was more than that. Those nurses touched and talked to him constantly. I had NO doubt that he wasn't getting the love he deserved for those few days a week I was gone. They sent pictures to me and I called constantly! And so we left. It was the hardest decision I ever made and yes.....sometimes I do regret it. BUT, sometimes I think it was the right thing to do. For one, honestly, mentally, I am afraid of what would have happened...of what I would have done. It was that bad! Secondly, my other boys needed me just as much as I needed them. They were going through hell too and all without their mom and dad near. I feel like my coming home saved them too. I truly do! And, the more I think about it the more I realize.....his medical care changed. Before I left I had a promise from Dr. Koch that he would send me an email each day with all of Bryson's medical changes....and he did. I was more informed of Bryson's medical care during that time than ANY other time. The medical staff respected us more and shared more with us. I called all day and each time I was given updates. It was almost as if we stepped out of the way and let the medical staff and doctors (and God) do what was needed for Bryson and THEN s - l -o -w - l - y he began to get better. And as he got better and got off of the ventilator we spent more and more time going to Dallas to be with him. And, mentally, I got better too. Once I stepped out of the situation and looked at the "big picture" and refocused.....I was rejuvenated and I felt like I could do this....and so could Bryson. I am not defending my decision....because it was ultimately MY decision but there was something else that people do not realize. If it were today, and Bryson had to do it all over again. I would NEVER leave his side, not even at night. The difference is this....Bryson was born and he was my son.....and then he was in the hospital for so long and I could not hold him or provide any of his care...and then, he essentially belonged to the hospital, not to me anymore. At least that was the way it felt. People may not understand this feeling but we never got to bond....not at all. The power of touch is so important and there were NO opportunities for bonding, there was only fear and horror and it takes a toll on a person. I began to push away my feelings for him and become numb because I was soooo afraid to truly, truly LOVE him. What if I let go and felt that attachment and love and he died? It may sound silly but it was a coping mechanism that I cannot explain. I used to worry back in those days that he and I would never be as close as I wanted because we missed all that bonding when he was born but that was a foolish thought. We are bonded like I had NEVER imagined in my wildest dreams.
I needed to say these things....I needed to validate my feelings....to let go of guilt and move on. I know that some people judged me very strongly for my decisions but I also know that most people understood, truly understood. AND, I learned a very important lesson through these feelings....I will NEVER judge anyone on decisions they have to make. Decisions that I know were hard to make. We all have it in our minds what we will do in the face of a crisis but that isn't how it works. We can have grand visions just like in the movies of us kneeling by our children's beds, never eating, never sleeping, fighting for their rights and NEVER giving up no matter what but you know what......this isn't the movies, it's real life and that isn't how it works. We are human, we make mistakes, sometimes we get it right.....we all have to make decisions.

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