Sometimes life doesn't go according to plan. Sometimes you find yourself on a road you never imagined you'd travel. Sometimes it can scare the pants off you. This is the story of how our little family came to be, continues to grow and how we (attempt to) manage the chaos.
Saturday, March 26, 2011
February 4, 2010
Something happened this week to a little girl who has become very close to my heart. She and her family have suffered through a very traumatic experience that they will likely never completely heal from. No parent should ever have to stand over their child's lifeless body and wonder if they will ever see them awake again and that is what they have had to do. Reading about their experience HERE and HERE brought back some painful and scary memories of my own. It took me right back to what has become termed by Marissa's doctors "The Event" of February 3, 2010.
Several months back I pledged full disclosure here. I promised honesty and openness even if it wasn't going to make for politically correct, fluffy, happy reading. Looking back, I think I have done a disservice in some respects by not being totally honest at times. This blog has become so much more to me than just a place to record our family's history. It is therapy, it is advocacy, it is education. It is a place where, hopefully, I can touch people. It is a place where, hopefully, another mom who is struggling can read and feel like there is someone who understands her. I have, so many times, gained strength to make it through the day by logging on and reading another mom's inspirational journey. I hope that I can be that inspiration to someone, that I can offer some shred of support to someone who is in need of it.
I have said it before and I will say it again - having a medically fragile child is tough. I don't think there's anyone out there who disputes that statement. However, there are few, unless they are living it, who can truly understand it. Every single day, we place our children's lives in the hands of others. We do research from sun up to sun down on doctors, specialists, hospitals, procedures, medications, and therapies. We try our best to ensure we are making the best decisions possible for our kids. It is a huge responsibility to know that WE are the ones who are ultimately responsible. If, God forbid, something goes wrong, it is OUR fault. WE made the decision to put our child's care in that particular doctor's hands. WE chose to give them that particular medication or try that particular treatment. Stressful? You bet. That said, even with the best research, the best intentions, and having chosen the best possible doctors, medications, and professionals for our children, the practice of medicine is imperfect. People are imperfect. Mistakes happen every single day. The likelihood that a mistake is going to happen with a child who is medically fragile at some point in their life is pretty darn high. Hopefully, the mistake will be small, but occasionally, unfortunately, it can be a big mistake. In Marissa's case, the mistake was the administration of too large of a dose of an anticoagulant that caused a (third) major brain hemorrhage. The bigger mistake was that her symptoms were ignored by two separate residents for over 8 hours while she continued to bleed. Her surgeon (whom I myself hunted down) quickly and appropriately handled the situation and also very quickly realized and humbly admitted his error. This bleed left her with extensive permanent damage. It also further complicated her already very complicated hydrocephalus. I vividly remember not feeling any anger at all over the initial mistake. Perhaps I was too overcome by shock and fear in the moment. The residents who ignored the signs and pleas of Kevin and the nurses - yes, I still have animosity toward them. I still felt total trust and commitment to Marissa's surgeon. I remember feeling that I didn't care what happened as long as she came back to us. It really wasn't until weeks and months afterward that the magnitude of the situation started to sink in. Now, over a year later, I can still remember every second of that day and night. I remember what she was wearing, what I was wearing, which doctors, residents, nurses were involved. I remember the look on Marissa's surgeon's face when he told me what had happened. I remember him coming in after surgery and telling me that she'd be returning on a ventilator and that we'd have to "wait and see." We were lucky - she DID come back to us - changed some, but still Marissa.
Ultimately, the choice was easy for us to stay the course, to stay with the doctor we trusted despite what had happened. To this day, I have never questioned anything he has said to me. I have never doubted him. He is talented and compassionate. I have never had any reason to believe that he was capable of providing anything but the best care for Marissa. He is world-renowned for what he does. He is also human. However, for some, the choice is not an easy one to make. There are simply too many possibilities to imagine, too many feelings to consider. Please pray for sweet Reagan and her family as they try to move past this difficult week and as they move forward and make some very tough decisions.