New Year

The last day of 2013 and the first days of this New Year have not been good days for Jack.  It’s not much of a Happy New Year around here. 

Last Saturday, they switched Jack to a fentanyl patch for pain management.  The first three days he did remarkably well.  Mark and I were both amazed at how good Jack looked.  I thought we’d found the ticket for a good run of pain control. Unfortunately, on day three of the patch, the pain came back with a vengeance.  The last few days have been some of the worst for Jack as far as pain. We just couldn’t seem to get ahead of the pain and we were having to bag him pretty consistently to calm him.

The hospice nurse visits Jack once a week to assess him and see how he is doing.  She only sees a snapshot of his week and it’s difficult for her to get an accurate picture of how he’s really been doing.   I called her on Friday rather desperate to do something to get Jack’s pain under control.  It was suggested that we bring Jack to Ryan House for pain management.  I agreed.  The only problem was, I didn’t have transportation because our van has engine issues and we haven’t made it a priority to get it serviced because Jack hasn’t been able to travel.  Fortunately, we were able to be transported to Ryan House via ambulance. 

We gave Jack a hefty dose of morphine before we left and he slept well last night.  Today, he showed them why we are here.  He had another very rough morning.  The hospice doctor doubled his fentanyl patch, morphine and ativan and he finally fell asleep this afternoon and he’s still sleeping.  There is a plan in place to try and get a handle on his pain, but it’s really going to be a day-to-day thing, reassessing as we go along.  I don't plan on leaving here until his pain has been appropriately managed for several days because I don’t want to get home and find ourselves in crisis mode again.  We’re technically here under hospice care for pain management, not for respite care. Although, I’ve been able to get some rest being here.

Jack is suffering and he’s weary.  I look into his eyes – those eyes that have been his voice his entire life and I see how tired he is.  He’s so, so tired.  Yet, it’s agonizing to have to make the decision of when to say “enough” and not feel like I’m giving up on him.  I’ve spent the last 14 years, 6 months and 27 days doing everything in my power to keep my child alive – literally.  5,324 days of threading a suction catheter down his airway 50+ times a day to clear the secretions so he can breathe, of managing ventilator settings, of bagging him through periods of respiratory distress, of pouring liquid nutrition into his stomach, of advocating with insurance companies, medical professionals, nursing agencies and DME companies to make sure he receives nothing but the best care possible.  How do I stop now? How am I supposed to do this? 

I don’t know how to do this. 

The decision to come to Ryan House is for pain management.  I fully intend on leaving here with Jack.  I’ve got to believe that the hospice team can get his pain under control – that’s what they do.  We’re just not ready to make the difficult decisions yet.  We need more time.

And, for the record, I lied.  Yes, Jack will be okay when he leaves this earth, but I will not be.  Contrary to popular belief, I’m not strong.  I’m crumbling from the inside out and it won’t be long before I can no longer hide it from the outside world.

I’m hopeful that tomorrow will be a better day for Jack.  

Onward.

On arrival at Ryan House