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.

Nurses

When we were in St. Louis in October, one of the people I wanted to see but didn't have the time to see was one of Jack's former nurses, Holly.  Holly was Jack's primary nurse the first year and a half following his discharge from the PICU.  She was young, but had a lot of vent experience.  She certainly knew more about kids/trachs/vents than I did.  Holly took very good care of Jack, despite having to deal with a crazy mother whose only focus was getting my kid off the vent and nothing - and I mean nothing, was going to stand in my way.  (Okay, so I was a little delusional back then.)  There were many times that Holly felt a trip to the emergency room - or at least a call to a doctor, might be in order.  But I was adamant that Jack would be fine and the last thing I wanted was to see a doctor or go near a hospital if there was any risk of an admission.  Holly handled my personality well.  Eventually, she had kids of her own and left nursing all together.  

Over the years, we've kept in touch with Holly and her family.  They come out to Phoenix every couple of years because her husband likes to golf here and at one time, they had family living here.  It's been nice to maintain a friendship with someone who played such an important part in Jack's life.  Holly cared for Jack at a time when he was very fragile.  

When we got back from St. Louis this year, I sent Holly an email and let her know all that has been going on with Jack.  After getting the update on Jack, Holly emailed me to let me know that she and her family had just planned a trip to Phoenix after Christmas because she wanted to see Jack. We were able to visit with Holly and her family this weekend.  It was good for us to see Holly and it was good for Holly to see Jack.  We have been very fortunate to have some of the best nurses care for Jack over the last fourteen years and most of them have become good friends.  

Without a doubt, we've breached the professional boundaries with almost all of Jack's nurses.  How can we not?  These people come into my home day in and day out and they are responsible for keeping my child alive.  Having other people in your home all the time is not easy.  There are days I wish I didn't need nurses.  But I do. I need the help and Jack needs the care.  In fact, these days, I need a lot more help that I am getting.  I've practically begged our nursing agency for more coverage, but they can't seem to provide it.  

I can't imagine having traveled the last 14 years without the help, knowledge and love of the nurses who've cared for Jack.  They allow us to carry on as "normal" a life as is possible under the circumstances and I am thankful every day for them.  

Four years ago, I wrote a more detailed (and more entertaining) blog post about nursing - from my first experience with nursing to how we got to where we are today with our current nurses.  Read it here: NURSES

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Holly and Jack circa 1999

Holly and Jack circa 2008

Holly and Jack 2012

Merry Christmas To All and To All a Good Night

Another Christmas has come and gone and fun was had by all! Jack has had a really good month - probably the most stable he has been all year.  His care is beyond physically exhausting and oftentimes I think it would be so much easier to just stay home with him than do all that is required to get him ready and out the door.  But, I know it's important for him to get out and it's good for us to do things as a family - all of us.  So, we just "Do It".  

 CHRISTMAS EVE

Before heading out to my sister's house

CHRISTMAS DAY

at my other sister's house

The boys hanging out watching TV

The "big" kids playing a game 

sisters

Face-timing with my brother and his family 

cousins

I have to share that the three present limit did not put a damper on Christmas.  In fact, Eric told us tonight before going to bed that this was "the best Christmas Ever!"  Sometimes less really is more.  

Well, that's all I've got for now. There is more I could write, but it's late, I'm tired and tomorrow is a work day.  Thanks for checking in on us.  Merry Christmas friends!

Reprise

In the spirit of Christmas and in thanksgiving for the amazing room makeover Jack received from Room for Joy five years ago this month, I am reposting my blog entry following our Room for Joy weekend.  To this day, we all continue to enjoy the gift of Jack's room, which was transformed from a room to a place - THE place to be in our house.  

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December 13, 2007

CHRISTMAS SPIRIT 

Eric came up to me last night when I was sitting at my computer and asked me if I had the Christmas spirit.  I asked him what he meant.  He told me "the parents in Polar Express didn't have the Christmas Spirit, so they couldn't hear the bell ringing."

If Eric had asked me that question a couple of weeks ago, my answer would have been different than it is today.  I really love Christmas time.  I love the sights, the sounds and the smells of Christmas.  Yet, anymore, Christmas seems to be more work than fun.  Granted, it probably has something to do with the fact that I'm the parent now, not the kid. But, I'm really tired of lists and "I wants" and the running around so that I can check things off the list. I just want my kids (and everyone else) to be happy about the Season, not the presents under the tree. So, yes, I've been a bit of a Scrooge the last few weeks and not much in the Christmas spirit.  I certainly wasn't hearing any bells ringing.

Then there was last weekend.  A weekend together as a family, all of us with no worries about housework that needed to be done - because we couldn't go home.  No worries about work - because going into the office wasn't an option and no worries about how much money we were spending - because the weekend was paid for.  Last weekend was all about enjoying the Season.  And enjoy we did!  But, the grand finale ... Jack's new room, was the greatest gift of all.  It was a gift from complete strangers who gave of their time, their talents and their hearts to make a difference in the life of a little boy.  Room for Joy exemplifies the Christmas spirit and because of them my Christmas spirit has been renewed.  In fact, I dare say that every time I walk into Jack's room ... I hear the ringing of a bell.

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Christmas in the jungle - picture taken this morning 

A video of our Room for Joy weekend and Jack's room before and after:

Make a video - it's fun, easy and free!
www.onetruemedia.com

Keeping It Short

Given the unimaginable that took place at Sandy Hook Elementary, Newtown, CT on Friday, there is certainly nothing going on in my corner of the world that is newsworthy.  My heart feels such sadness for those who lost their lives and for their families who must somehow find the strength and courage to get up each day and simply put one foot in front of the other.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Lord, make me an instrument of your peace.

Where there is hatred, let me sow love.

Where there is injury, pardon.

Where there is doubt, faith.

Where there is despair, hope.

Where there is darkness, light.

Where there is sadness, joy.

O Divine Master,

grant that I may not so much seek to be consoled, as to console;

to be understood, as to understand;

to be loved, as to love.

For it is in giving that we receive.

It is in pardoning that we are pardoned,

and it is in dying that we are born to Eternal Life.

Amen.

Prayer of St. Francis 

2012 - What A Year

Consider this my 2012 Christmas letter because if I were to pen and mail out a synopsis of this year's happenings, I'd need extra postage and a whole lot more of your addresses.   

As you all know, it's been an exceptional year. 

January started out on a fit and fun note as our Cure CMD team participated in the PF Chang's Phoenix Half Marathon to raise funds and awareness for Cure CMD.  

friend and Cure CMD Founder - Anne Rutkowski, M.D.

February, I made the mistake of stating this in a blog post:

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so lucky as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

What was I thinking? I should know by now to never, ever tempt fate.  

Jack was upgraded to the latest and greatest ventilator.   

I was so proud of myself that I bucked the system and was able to make it happen without the protocol hospital admission.  Pride goeth before a fall?

March brought us Spring Break travels along the California Coast with our youngest. 

 

A 10th birthday party

A 19th birthday

Our first hospital admission and discovery of the kidney stone from hell

And the (missed) roll out of the TouchStones program during Grand Rounds at Children's Hospital of Orange County.

April included a 26 hour turn around trip to St. Louis and another half marathon with Team Cure CMD

Surgery to get rid of partially remove the kidney stone from hell, fraught with complications and collateral damage 

May was a bit calmer, 

A birthday for me

What we thought was the last surgery to get rid 

of the kidney stone from hell

A rare evening of family fun 

feeling good and sharing smiles

June hosted the last day of 4th grade 

A fun week at Del Mar Beach, Camp Pendleton, California with my family who traveled from Arizona, Ohio and Alabama for a family reunion of sorts

A second trip to California to present the TouchStones-CHOC program at the Patient and Family Centered Care conference in Long Beach followed by the chance to catch up over drinks with one of Jack's former docs who now lives and practices in LA. 

And best of all, watching my once-terrified-of-the-water kid participate in summer swim meets

July hinted at what was coming with another hospital admission and a reminder of why I insisted on a PICU admission for Jack back in April.  

The month wasn't all bad and included a trip to the ball park with my sisters 

hiking in Northern Arizona

and the first day of 5th grade

August and September tortured us with 20 days of incarceration in the PICU at Phoenix Children's with a very sick and hurting Jack.  

Rubbing salt into the wounds was a missed Disney Half Marathon with Team Cure CMD.  













sidelined supporters.



October we hauled our weary selves 1500 miles to see doctors I trust and friends who love us.  It was an exceptionally tough week that brought disheartening news about Jack's heart and overall disease progression.  The bright side of our trip included a visit with Jack's first pediatrician and someone who stood by my side day in and day out during those many months Jack was in the PICU the first year of his life.  We also met up with Jack's former Phoenix physical therapist who we haven't seen in over six years. I was able to fit in dinner with a friend who was the owner of the nursing agency that cared for Jack the first three years of his life; dinner with three of Jack's former nurses (NICU, PICU and home care); lunch with Jack's neurologist; and an evening with friends who share a similar journey as ours.  We were welcomed again into the home of our friends David and Amy who, despite all the stuff we bring into their home, never make us feel like we are in the way or overstaying our welcome.  There were other friends to see and places to visit, but exhaustion and time limitations kept us from seeing everyone we wanted to see.  I try not to dwell on the fact that this trip was likely Jack's last trip to St. Louis.  Not necessarily because he won't be here to make the trip, but because of our shift in focus when it comes to Jack's care.  The trip was necessary and worthwhile, yet difficult in many ways.

our gracious host - happy to see Jack

nurses and friends

kindred spirits

Not to be forgotten, October also included a 22nd birthday for Hilary and a 23rd anniversary for me and Mark. 

celebrating on the road (on the way home from St. Louis).

November rang in a 14th birthday

We continued the quest to find the gene behind the disease as we shipped the blood that holds the key to the National Institutes of Health

and we celebrated family and a day to give thanks.

So far, December has been a month of relative calm and stability. (I should know better than to say that out loud, eh?)  I'm cautiously optimistic that it will be the first month since January that won't involve a visit to a hospital or doctor's office.  Jack has felt well enough to participate in a family Christmas card photo shoot.

And, he even tolerated an evening out with his sibs this weekend.  

December brings to close a year I'm all too happy to put behind me.  This year was hauntingly similar to Jack's first year of life.  Seeing my child in distress and not knowing why, the intensity of the PICU, too many doctors, lots of opinions, few answers, and too close to death for comfort.  But, we survived.  We survived because of the unwavering support of friends and family.  

So, I close out my 2012 recap with a huge THANK YOU to all of you who follow our journey, who offer words of support and encouragement from afar and who help in tangible ways from near.  Jack and I are blessed to be surrounded by the love of so many people.  We wish you all a ....

Merry Christmas

Happy Hanukkah

and

Happy Holidays

as the case may be!