Monday, January 28, 2013

More on Palliative Care

After talking with Jack's new pediatrician about Jack's never empty stomach, she said the problem is a motility issue.  Jack's GI system has slowed down and he is not moving his food through like he used to.  We talked about giving him meds to help with motility, but she said she didn't like to prescribe meds for this unless the child is gagging or throwing up (which Jack is not) because the meds have their own set of side effects.  As you all know, I'm not a big fan of meds either.  She suggested to simply cut out one can of food per day.  I agreed completely.  Jack has been on four cans of formula per day for the last five years.  He is now only getting three cans of formula per day.

The decision to cut back on Jack's food is a palliative care decision.  The focus is not on optimizing Jack's nutrition and growth at this point, it's about optimizing Jack's comfort. This is a hard concept for some to grasp.  In fact, when I mentioned this change to the case manager for our nursing agency, he commented something to the effect that we will have to monitor Jack's weight and if he starts losing weight, we can re-evaluate.  I had to point out to him what palliative care means and that "no", we wouldn't be monitoring Jack's weight.

Remarkably, cutting out one can of food per day has made a significant difference in Jack's level of comfort.  His heart rate had been consistently running in the high 90s to 100s prior to reducing his formula and now he's running consistently in the 50s and 60s.  Not only do his numbers indicate he feels better - he looks better and he's clearly so much happier now that his stomach contents aren't crushing his lungs and heart. It is the little things after all!

As I continue to blog, I intend to focus on and share the palliative care part of Jack's life because that is where we are now in this journey.  I will share the challenges we come up against and the decisions we have to make for others who might be in a similar place now or who might find themselves in a similar situation in the future.  I'm also sharing because I've had more than one person ask me what "palliative care" is.  Pediatric palliative care is a relatively new discipline.  A recent article I read stated: "Pediatric palliative care has grown considerably in the past decade since the Institute of Medicine report When Children Die (2002) that stated that care for children was not 'compassionate, consistent or competent.'  Since that report, there has been a proliferation of pediatric palliative care programs in children's hospitals throughout the country."

Jack's  new pediatrician graduated from medical school in 2000 - she is relatively young and her speciality is palliative/hospice care.  I can't say enough how fortunate I feel that she agreed to take Jack on as a patient.  I can also say, unequivocally, that I'm so ready for someone else to take the lead and direct me when decisions have to be made.  I know some of Jack's doctors who might be reading this will find that hard to believe, as I've always been the person who believed I was leading the charge on every aspect of Jack's care at all times.  But, seriously, this is new territory for me and I'm just happy to have an expert in the field leading the way.

It's not to say that making the decisions is easy.  The guilt is overwhelming at times.  I question whether Jack is really that "bad" that he needs palliative care, or whether I'm taking the events of last year too far.  But, as I was reminded today when chatting over coffee with my "support person" from the palliative care program - Jack has a progressive disease.  To put it bluntly, Jack is going to die from his disease.  There are chronic conditions and there are progressive conditions. Progressive generally includes chronic.  Chronic does not always include progressive.

For all of his life, Jack has been able to do so little from a physical perspective that the progression of his disease has gone mostly unnoticed over the years.  However, last week I decided, for some unknown reason, to watch one of the videos I have of Jack on the sidebar of the blog.  I watched the video titled "Anyway" that I created in 2007.  I have to tell you, it took all I had to hold in the sob that came out of nowhere when I watched this video (I was at work - crying would not have been a good thing!)  Watching the video made me realize just how dramatically Jack's disease has progressed.  Five years ago, when I shot the video, the idea was to show the lack of strength in Jack's arms and hands.  Well, compared to what he has now, he had a tremendous amount of strength.  The decline is tough to see, but it's the affirmation I need to help ease the guilt that goes along with making the decisions that have been made and will continue to be made as we travel "Jack's Journey".

Comparing the "Anyway" video and the short video clip from tonight gives you a glimpse of just how much Jack's disease has progressed.  It may appear subtle to some, but it's really quite significant.


Susan said...

Ann I'm sorry. It is so hard to watch someone you love lose function. I'm so glad to hear that Jack is more comfortable. He has such an expressive face, I think reading it is going to tell you what you need to know as you navigate through the palliative care process. (((((HUGS)))))

Clara Harmonson said...

Dear Ann, thank you for your honesty, your courage and for sharing the good, the bad and the ugly. We were in an weird place between home care and palliative care with Zach, and it was very hard to just put it all in plain words out loud, just to have everybody on the same page.I keep you and Jack in my thoughts constantly, and my heart breaks with Jack's videos. I'm glad that you have a good pediatrician for him in this new normal. Still praying for you. Always.

Elizabeth said...

I wish I still worked with you so that I could give you a big hug and tell you what a great mom you are!

Ann said...

Thanks you ladies. Your support means the world to me.

Sarah said...

Remembering how things really were versus seeing the reality of what it was can be so hard. But you absolutely did right by yourself in letting yourself see guilt. You have always done right by Jack. Hugs and loves!