April 24, 2012

First off, I tried to post yesterday, but it gave me problems and I lost that post. Nothing new happened though. So I'll just move on to today...

This morning was full of anxiety waiting to hear if the doctors were going to extubate Clayton. They made the order to do it and this time asked George and I to step out. Last time they tried we were able to be there. They prepped everything and made sure they had what they needed whether the attempt was a success or a failure.
Knowing how long things take, I set my phone timer for 10 minutes. Nothing. Trying to be patient, I set it for another 10. Half way through the second 10 minutes, George and I were told we could go back, but before we could get down the hall a nurse stopped us saying they needed a few more minutes. So back to the waiting room we went. I set my phone timer for 5 minutes determined I was going to know what was going on. After it went off I walked my axious behind right back there and saw through the window he had a fellow at the head of his bed holding a mask over his face, an attending beside him, two nurses and the head attending there as well. Obviously something wasn't going as planned. I didn't go in in order to not add to the chaos, but I waited in the hall this time. This momma doesn't play. I need to know how, when, what and why. As we were waiting back in the hall, the attending stepped out and let us in. She explained that his airway was too swollen for him to take sufficient breaths. This was due in part to his rhinovirus (mild cold). That is why they don't like to operate on sick children unless necessary. Our case was necessary. They worked nonstop to help him breathe without the tube. The tube was probably out for 20 minutes before his CO2 levels were elevated to a point that can cause cardiac arrest and therefore they asked us to leave and immediately re-intubated him. To answer the inevitable question from that statement though, he is OK though and there was no damage from trying to take the tube out.
Because he has now been intubated for so long, they are going to put in a special feeding tube that goes right past his stomach to avoid reflux. They will use that to give him nutrition the rest of the week.
That will mean he has a tube coming out of each nostril- one to express air from his stomach caused by the ventilator- and one that goes beyond the stomach to feed him. He then has lines hooked up to each of the lumens on his Hickman, IVs in each wrist, a chest tube draining fluid from his surgery sight, a catheter and all of the monitoring devices hooked to his chest and of course the ventilator tube in his mouth. It is not a pleasant sight and I am sure you can understand why I hesitate to show revealing pictures of my baby in his vulnerable state. My peace comes from knowing he will be asleep for a couple of days.
That is the plan. They will put him to sleep for a couple of days, let his body rest, feed him, love him, watch over him, start prepping him with steroids on Thursday and try again on Friday. If we successfully get him off the ventilator on Friday, then the duration of our stay shouldn't be much different then originally expected. Maybe a day, maybe nothing. There is no point speculating beyond that though.

This situation sucks. It sucks to walk into the dining room at RM house at dinner time and see as many as twelve kids with cancer. It sucks to walk into the day clinic at Memorial Sloan and see 20 kids receiving some kind of treatment. Sometimes the kids have the energy to play and sometimes they don't. It is sad knowing the battles they and their families have to endure, yet it is heart-warming to see the resilience and optimism with which these children face each day. That's the thing about childhood cancer, it is both heart-breaking and heart-warming.
Sometimes it's hard to imagine that we are going through this. Is that really my child laying in that bed? Is this really my life? The answer is always yes. That is my child, this is my life. It is what it is. You wake up, you get dressed, you love your baby and you go to work or the hospital or play in the backyard. Whatever the day holds, you do it. Because whining about it and crying about it doesn't change it. Sometimes it's necessary to cry. After all, you don't want to go crazy. I had a phase a couple of weeks ago and I distinctly remember crying four separate times in one day. (I even came back from my lunch break one day and forgot I had been crying and had to duck back out for a minute to fix my face.) Tears or not, at the end of the day your life is your life and as the wise Rafiki from the the Lion King says, "You can either run from it or you can learn from it". Learn to be stronger, learn about a cause that needs help, learn everything there is to learn about it because knowledge is power. Whining about things doesn't make them better. Crying is just a temporary release. But learning something and using that knowledge to advocate for positive changes, now that is worth any exhausted parents' time. It will change you, and depending on what you choose to do with that knowledge it could change the world.

But let me get off my soap box...

Everything else with Clayton is doing good today. Kidney function great, healing fine, etc. Now he is resting peacefully as he will stay for the next couple of days.

For now, I am going to go for a walk so I don't come home looking like I just ate my way through a bakery. Then I am going to be meeting the family of a little neuroblastoma survivor from Stapleton. They are coming up here today for scans, so we are going to finally get to visit face to face rather then by text.
More later...