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.

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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!