April 26, 2012

So I would be lying if I said the past couple of days had been boring. In fact yesterday afternoon was quite stressful. It has been a battle to find the right combination of meds to keep Clayton sedated. We are far enough out from surgery that pain is not a huge issue. The issue is that Clayton needs to be sedated enough to keep him still. After our second failed attempt to extubate him, our focus has been to keep his lungs dry and keep him still in order to keep the tube from irritating his already swollen throat. You would be amazed how hard it is to sedate this child. Everyone is surprised. As I've said before nothing is easy with this him. Makes for lots of adventures!
In addition to playing with his sedation, we have been combatting some (very common) PICU delirium and some respiratory stat issues. The delirium is just where the babies get dazed from their environment and the sedation. Respiratory issues were also resolved. The details of these things don't matter and are too exhausting to review. We went over and over and over and OVER things last night with the doctors. We resolved some things and had a much better day today. Sometimes it takes a little pushing for the doctors to accept that while they are the medical professionals, the parent knows their child and therefore might know what works better for them. It's a delicate balance figuring out when the doctor is making the right call verses when you should step up as a parent and override them. Because as the parent, you CAN override them. You can say no, the trick is knowing when it is necessary to say no and when you are just being stubborn or nervous. To be successful as a parent at this, you must pay attention. Doctors and nurses aren't always right. They both mess up. And they don't know any more about your child then what they read on a piece of paper and learn in the couple minutes it takes to examine them. Every mother I know whose child has cancer will tell you to trust your intuition. If you feel something is wrong, it probably is. There is never any shame in questioning everything.
Clayton's little PICU sweetheart, Zoe, had a rough time this evening and it is heart breaking. It is heart breaking knowing that could have been Clayton just as easily has it was her. It is heart breaking seeing the anguish on her parents' faces- especially since this world is new to them. It is heart breaking because to it is impossible to see something so sweet and innocent and understand why they are lying in a hospital bed. It was heart breaking because even though it wasn't Clayton, I truly understand how they felt in that moment. It is the moment your world stops. Your head spins. And your heart hurts. Because you have no idea what is going to happen next. But whatever it is, you know it is going to happen fast relative to the situation.
I have had too many of those moments in the past four years of my life. It's funny, when Clayton was just a few months old my sister saw a picture in my house of me and my friend Blair at an Auburn game and she commented how much younger I looked. That was the moment I realized how much being a parent had aged me, because at the time, that picture had been taken less then a year before. My teeth, my skin, my sanity and my heart are all paying a price for being a parent. To think, I'm only a few years into parenthood...God help me.
Anyhow, we hope the third time will be the charm with the extubation tomorrow. Zoe is suppose to be extubated tomorrow as well- not sure if that has changed. Please pray for Zoe and Clayton to both have successful extubations tomorrow!