Most days I wake up ready to tackle the day and do all the things that Gavin requires of me -- yesterday was a day where I just wanted to throw in the towel, hand in my badge and sign off. It was a very bad day. It started with a preop appointment at 12:30. I sat for three hours with both kids. I didn't see anyone until about hour number 2 and when she came in I had to spend what felt like forever going back over Gavin's past medical history -- which would even be difficult for the best historian to repeat. They decided they wanted labs. Great. The actually office does not draw from central lines but a nurse there, who has taken car of Gavin before offered to draw labs. She had trouble getting blood to come back and only got about 5cc's. I offered to help and i could tell she was getting flustered. I know Gavin's line like the back of my hand -- I use that line 24 hours a day for the past 2 years. I know Gavin, I know his line, I know how his blood flows and I also know how at times his blood clots. She refused to let me help. She walked out of the room with blood left in his line to get more supplies. I'm sure all my CVL mothers are shaking in their boots by now. Well needless to say she comes back and now can no longer flush the line. I has clotted off. She doesn't understand how it could clot off " lines just don't clot that quickly" -- yes they do. I'm not really upset with that person but it's the theory that once a parent enters the hospital their child is no longer theirs. My job is to protect my child's life and Gavin's line is his life line -- his very existence depends on that small string of plastic implanted in his chest.
Besides the line drama, no one really seems to know what the heck in going on for today. We don't know the game plan as far as how they are going to do the small bowl follow through. There are so many not so typical issues playing into this because Gavin is not the typical child -- no child with Mito is.
After storming out of preop with both my children, a blood clot in a CVL and my threats that I'm taking down the entire surgery department, not to mention the many looks out in the waiting room as I storm by with 50 million tubes hanging out of my child and a rather disheveled 4 year old who has been cooped up in a small room for 3 hours -- we headed somewhere, which eventually ended up in front of our social worker and Gavin's covering doc who so kindly helped figure out a plan and clam me down. We spent the next few hours down in the er unclogging the line, which was saved. Thank you Jesus.
So here I am. It's 6:30am and I'm getting ready to head back down to Delaware for the fourth time this week. I'm tired. I'm still emotional. I scared for Gavin today. I don't want to see him in pain and I'm scared for a possible infection following the study. I'm sure he will be fine but will I be fine is another question. Will the OR staff be fine with this ranting mother --we'll see.
I really am ok. Some days, as any mother with a medically intense child would say, I'm just done. But in reality as long as I return to the hospital with my son still with me -- I'll keep coming back. I'll fight every battle to come and be darn sure I will protect my child - and his line (who I often refer to as my other child).
I have triplets.