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.

Chugging Along

I've used both this title and this picture in a past blog post.  After six years of blogging, it's difficult to come up with creative post titles.

Anyway,

We are all chugging along here just trying to maintain the status quo and finding the joy in the journey.  I'm a bit manic these days.  Up some days, down others and every where in between.  There is so much I want to share, but when I sit down to write, it's too overwhelming to put into words all the thoughts that consume me these days.  It really is the calm between the storms that can be the more difficult times to get through.

The good news is that things are relatively calm as far as Jack is concerned.  We are struggling with getting all of Jack's food and the extra water in him each day.  His stomach is never empty.  I decided the other night to completely skip his overnight feeding to give his stomach a chance to rest.  I thought about if it was anyone else - someone who could say how they felt - without a doubt, there would be times when they'd say "Enough! I need a break from having to consume all this water".  So, I decided to say "enough" for Jack because he has no choice but to put up with everything we throw at him.  He can't yell at us, he can't run away, he can't do anything to let us know that he's had enough.  Intuitively, I felt like his stomach needed a rest. It's a balancing act to make sure that we do what needs to be done to keep the kidney stones away and still allow him to be comfortable.

Now that we've been out of crisis mode for a few months, I need to attend to the things that were put on the back burner.  Jack needs to see the dentist, it's been years since his teeth were cleaned.  Problem is, they have to put him under anesthesia to clean his teeth and I'm afraid I'll get push back because of his decreased heart function.  It's difficult to know how hard to push because I just don't know how stable Jack is.  I guess I'll cross each bridge as I get to it. Right now, I'm just having a hard time getting us to the bridge!

I'm trying to maintain my sanity by getting back to hiking on Sunday mornings.  It's tough to get up before the sun is up, but it feels great after hiking a good two hours.  I'm also signing up again for the Disneyland half marathon as part of Team Cure CMD.  It looks like I'll only get in one half marathon this year, compared to the three I did last year.  If you recall, I didn't get to participate in last year's Disney half because Jack was taking up residence in the PICU that weekend.  It's the motivation I need to get out a couple of nights during the week and pound some pavement.  Exercise is good medicine for me - although, an ice cold beer every so often isn't a bad option either!

That's the update from here.  I'll leave you with a spectacular Arizona sunrise photo from my Sunday morning hike.

(iPhone photo with purple haze filter)

Thanks for checking in!

p.s. AmyK - please email me. I want to send you something. thx.

A Gift from my friend Jenny

For those not on Facebook:

My friend and fellow blogger Jenny is an exceptional writer.  I am humbled that she took the time to pen a blog post about Jack.  What a gift she has given to me and Jack.  

Click the link to read:

One Beautiful Family 

Random Short Update

I sat down at the computer with the intention of writing a blog post on several occasions this last week. But my mood has been so poor that what I would have written would not have been enjoyable.  This post probably doesn't qualify as enjoyable either.

Nevertheless,

Jack is fine.  He's pretty much the status quo and feeling mostly well.  But, it's a lot of work to keep him that way.  His care is non-stop anymore and I'm tired.  So tired that, like tonight, after filling the bag for Jack's feeding pump with 800 cc's of formula and water, I then proceeded to drop the bag and the entire contents spilled all over Jack's bathroom floor.  Not only did I then get to put together another feeding bag, I got the added bonus of getting to mop the bathroom floor.  Of course, I'm swearing like a truck driver and Mark comes rushing downstairs wondering what the heck is going on.  So, yes, I'm tired. And when I'm tired, I'm not in a good mood. I almost wish I had never heard the words "caregiver burnout".  It's as if I've now been given permission to be in a crappy mood all the time.

For the record, I get tired of hearing myself say I'm tired all the time, but being tired has become as much of who I am as my name.  "Hi, I'm Ann and I'm tired".  Chronically ill kids make for chronically tired parents.  

I need an attitude adjustment and I need some rest.  The attitude adjustment is completely within my control. Getting more rest is not.  Every day my challenge is to let go of the anger, find joy in the little things and accept that the status quo is good enough. Some days are easier than others. Weekends are brutal.    

I hope to have something more substantial and interesting to share in the near future.  In the meantime, I'll leave you with a quote I recently came across in a book I'm reading.  The message really spoke to me (and is helping with my attitude adjustment):

I slept and dreamt that life was joy.

I awoke and saw that life was service.

I acted and behold, service was joy.

- Rabindranath Tagore

_______________________________

And just because I feel like sharing random old pictures of Jack, here is one of my little boy "standing" in his stander.  I think he was about a year and a half old here. Stinkin' cute, isn't he?!

Updated to Add a Picture

In my prior post, I forgot to include my very favorite picture of Jack and Holly taken at our going away party in St. Louis back in 2002.

For a kid who doesn't talk, I'd say there was a very special conversation going on here.