Tuesday, August 27, 2013

Deja Vu

(picture courtesy of my friend Eric Fisher)

At the time we transitioned Jack to a palliative care doctor last November, we were given a script for morphine.  Since November, we've had to give Jack morphine here and there because of pain, but he's not needed it on a routine basis.  For the past few days, Jack has been in significant pain. His heart rate is high and his sats are low enough to require supplemental oxygen.  As we always do when his sats are low, we approach it first as if it might be a respiratory issue.  We give repeated rounds of the Vest , breathing treatments and extra suctioning.  When that doesn't resolve the problem, we know the low sats are pain related.  I gave Jack the morphine in the amount and frequency as written. He got minimal relief.  I decided to sleep with Jack last night so that I could keep an eye on him. As I lay next to him watching him struggle to close his eyes and get comfortable, it was killing me because I just didn't know why he was hurting.  After watching him for awhile, I couldn't stand it anymore.  I needed to rule out anything obvious before I jumped to the conclusion that it has to be the damn kidney stones.  Knowing how fragile Jack's bones are, I always start there.  I moved Jack's arms and legs to see if anything hurt when moved.  I noticed when I got to his left leg that his knee was slightly swollen and it didn't look right. I heard a popping sound when I bent the leg at the knee.  Jack didn't wince like he has in the past with a broken bone, but he definitely didn't like it.  My gut told me that his leg was broken.  Jack eventually fell asleep, although his heart rate hovered around 100 all night, telling me that he was still in pain.

First thing this morning, I called and was able to get Jack in to see his orthopedic doc. The x-ray showed that he has an impact fracture of his left femur - a very obvious fracture on x-ray. This is the second time he has suffered this kind of fracture.  They splinted Jack's leg with a knee immobilizer and sent us on our way.  A couple of people have asked how or when the fracture happened.  I have no idea.  I don't know when it happened, other than it likely happened within the last week according to the orthopedic doc.

Jack continues to be in a lot of pain despite having his leg immobilized and getting morphine as often as he can.  I called the palliative care doctor this afternoon and asked if we could increase the amount of morphine because the dose as written wasn't touching Jack's pain. She doubled the dose and as I sit here right now next to Jack - he is still in pain.  His heart rate is high and he's requiring oxygen to keep his sats up. We cannot seem to get him the pain relief he needs.  I find it difficult to believe that the broken leg is causing the amount of pain he is still in. So the question is, how much time do I give it before I haul him to the ED to find out if it's something else? And where do we start looking? Do we consider kidney stones as the source even though he had a CT scan just a month ago that showed that the stones were stable?  I can't begin to adequately articulate how incredibly stressful and disheartening it is when you have a child in pain who cannot tell you where it hurts.  I just want this child to get some pain relief so he can get a restful night's sleep.  He is so tired and he can't get comfortable.

I'm supposed to leave for LA on Friday for the Disney half marathon.  I think Jack must not want me to do this race because, if you recall, this time last year we were inpatient at PCH and I had to miss the race.  I'm still optimistic I'll be able to go to LA, but I guess time will tell.

Que sera, sera.


Anonymous said...

Ann, Praying for you and Jack as I read this. It is so hard, as you say, to know your kiddo is in pain but you don't know exactly why or how to make it better. I wish he didn't have to be dealing with a fracture right now and I really wish you could make him feel better somehow. I feel tired for you. I have been there. The emotional impact on us moms of special kids is physically exhausting. But we love our kiddos and will do anything for them. Praying for strength for you, emotionally and physically. And praying that Jack will be better really soon so you can do the run in LA.
Know that I am praying for you and for Jack as you come to mind from week to week. I really am.
Keep looking up!

Susan said...

Ann I'm so sorry. I'm sure that knowing Jack is in pain, even despite morphine is terrible. Big HUGS to you both.

Anonymous said...

Ann, you are doing a fantastic job in getting Jack the care he needs. Hospice is just another step. They can provide you with pain control, but also with mental relief for yourself. Let them help you, too! Good luck in the rest of Jack's Journey. We are here to listen any time.

Ann said...

Thank you Amy, Susan and Anonymous. xo