Remembering Anton

I was told about Anton when he was 10 months old. I remember thinking he had an amazing smile

 

Then I met his folks on-line- these amazing people who became his forever family.

 

 

I met Anton for the first time in Florida in 2012 - this memory still makes me happy.

 

It has been a long hard road since then.

 

 

Today, my heart is heavy as we say goodbye for now to this little boy who changed us all so much.

I am praying for his family tonight.

 

 

 

Certified

I took a Pediatric Certification review course in October with an amazing instructor, Dr. Louise Jakubik of Nurse Builders. The course was sponsored by my hospital and over the course of two full days we “reviewed” everything a certified pediatric nurse needs to know.

Reviewed is in parenthesis because some of the information we reviewed was brand new to me. Remember, my Pediatric Nursing rotation was in the fall of 1988. Still- a good portion of the information was familiar- areas where I had practiced were easily reviewed and the tools we were given over the two days were invaluable.

After the course, I applied to see if I was eligible to take the test, and once I got approved, scheduled the exam for December 5^th. I reviewed and studied then did an on-line practice test. I barely passed and I got really nervous.

The test is 175 questions, of which 150 are scored. It is completely multiple choice, but it is the “best” answer of the four… which makes the test harder.

Passing and becoming certified means I can be considered for promotion at some point. That is a really big deal.

So I studied… did practice questions… reviewed.

Finally test day came. I had not realized how stressed I was. The day was foggy, and the 14 car pile-up closed the highway right in front of me, so channeling Tony Stewart, I swung over multiple lanes to get off the highway before I was trapped with nowhere to go.

Driving locally made the trip longer, but I had left a ton of extra time, so I got to the test center ahead of my 9am test time. I had to put all my things in a locker, show the empty pockets of my jeans, and then I was wanded before being seated for the test. 

The tutorial that explained how the computer based testing worked seemed to take longer than the 12 minutes the clock said elapsed.

Finally the test. 175 questions. Some were easy- I knew them cold. Some I outright guessed at. But mostly I just said what I would do in a given situation.

After the 175 questions, I had to evaluate the testing and center… It seemed to take FOREVER!

Finally my results were posted. I passed. I could not tell you if I passed by a point or twenty. But I am certified. And so very relieved!

When over isn't over...

Ebola is back in Liberia and I am heartsick. I am praying for West Africa. The infrastructure and economies of the affected countries will take years to recover.

Kyle Busch, a true Cinderella story

It is no secret the new Chase format annoys me- how can it be a Championship when the results are based on taking out another car to advance and plain out good luck, rather than who wins the most and has finished the best over the year? Or avoiding bad luck, perhaps.

Still, except for Kevin Harvick (who wrecked the Talladega field to advance) I was happy with the final four drivers.  And Harvick had an amazing year- was that 14 second place finishes? All the money was on Harvick to win. Gordon was the sentimental favorite, of course, driving in his final race, but it seemed everyone thought it was Harvick’s championship to lose.

I was with the underdog- The one car team from Denver, with Truex, who got a raw deal in the scandal at Michael Waltrip Racing a few years ago. Martin was my man going in. And can I say it completely freaked me out when they caught fire in pit lane?

Strangely, it didn’t seem to bother either driver or crew chief… WHAT!!

The car however did not cooperate with the dream- it was hard to handle and Truex finished 4^th for the season. His best season ever, but I was still a bit sad for him.

And so we come to Kyle Busch… who has, in a word, been terrible in the Chase races up until this year. Kyle Busch, who swept at Bristol in 2010, had never won a Chase race.

And then on February21, 2015, the day before the Daytona 500, Rowdy took part, as he often did in the Xfinity Series race. On Lap 113, we all watched as he hit a wall with no SAFER barrier. We watched his very pregnant wife race to the infield care center as Kyle had to be helped from his car. He was hurt. Badly hurt. But conscious, thank God.

11 races came and went while Kyle Busch recovered from multiple lower extremity fractures. He was still home when his son was born on May 18th. A  lifetime by NASCAR standards.

NASCAR said that if Kyle came back and won a race and could get himself in the top 30 in points, they would consider him eligible for the Chase. So back he came and race he did. In short order he won, first at Sonoma, then at Kentucky, Loudon, and the Brickyard back to back.

Superman made it into the top 30 and the Chase, and this chase was different. He was in Victory lane congratulating winning drivers. He joked at being a big Jimmie Johnson fan when Johnson snagged a win from Bad Brad. He made the final four… AMAZING!

He was playing with house money. And he raced like he was on the track by himself.

I will skip over the late race bogus debris caution… NASCAR really, I am rolling my eyes!!

Rowdy bringing it home was pure joy- even as I rooted for Truex, this is a fairytale ending I can get behind.

So the Drive for 5 is over, Harvick is a one-hit wonder for now, and the little team that could landed 4^th- which is nothing to shake a stick at. M&Ms all around- See you all in Daytona.

Peace

"The New Colossus"

By Emma Lazarus

 

Not like the brazen giant of Greek fame,

 With conquering limbs astride from land to land;

 Here at our sea-washed, sunset gates shall stand

 A mighty woman with a torch, whose flame

 Is the imprisoned lightning, and her name

 Mother of Exiles. From her beacon-hand

 Glows world-wide welcome; her mild eyes command

 The air-bridged harbor that twin cities frame.

 

 "Keep, ancient lands, your storied pomp!" cries she

 With silent lips. "Give me your tired, your poor,

 Your huddled masses yearning to breathe free,

 The wretched refuse of your teeming shore.

 Send these, the homeless, tempest-tost to me,

 I lift my lamp beside the golden door!

 

 

At the base of the statue France gave us long ago, these words call welcome to the immigrants and refugees of the world. As the first American born member of my family, I am grateful my parents had the opportunity to come to this country. Each family here has immigrants somewhere in their family tree. Whether they crossed the Bering Strait, came in the Mayflower or arrived on an airplane like my parents did in the 50’s, we all hail from those who left home for this new world. With all the anxiety and fear this week has brought, it is hard to remember we were all welcomed in.  Praying for peace.

The end of an epidemic?

The last patient in Guinea has tested negative twice, so if no new cases pop up in the next 6 weeks, the epidemic will be over. The 21 day old girl, according to the BBC, was born the day her mother died of the disease, and if she survives, she will be the first baby to survive more than a couple of days beyond her mother's death.

The Ebola Epidemic that started over a year ago in Meliandou, a small village in south-eastern Guinea. There, a two year old boy, Emile Ouamouno, died after a fever, headache and bloody diarrhea. It was in December 2013, despite his family's best efforts, he died - followed within days by his three-year-old sister Philomene and their pregnant mother Sia. 

Since their deaths, over 11,000 people died in six countries and many survivors have suffered permanent harm.

There were heros.  One was Dr Ameyo Stella Adadevoh in Nigeria, who gave her life, but stopped the virus in its tracks there.

There were miracle drugs: Zmapp saved lives. TKM saved lives.

It is hard to believe two years will have passed by the time it is all over. Harder still, I am sure most people think it already is. Just as it took months for the world to realize there was a serious epidemic in Western Africa, the epidemic disappeared from the headlines long ago- no longer the top story, even as the deaths continued.

And the rebuilding has just begun.

Insurance, bah humbug!

Prior approval, prior authorizations and peer to peer reviews are all tools by which insurance companies:

A.      waste provider time

B.      avoid paying for things providers think will benefit their patients

I will also point out that peer to peer is a misnomer. An OB/GYN is not a peer to a Genetics doctor. Just because you have MD after your name, you are not magically endowed with the knowledge and experience to judge the care of other disciplines of medicine. In the same way you would not want my favorite Gastroenterologist delivering babies, I don’t want you telling my doctors they don’t really need a microarray.

This is a world where a patient well managed on a non-narcotic pain medication is told it is better to be on Oxycodone, because it is cheaper. Forget the addiction potential- it is all about the bottom line.

Medicine is hard enough without adding these obstacles. How can we provide the best care when somebody wholly uninvolved gets the final say on key decisions?

Is this the best we can do?

NASCAR CHASE and Champions

I have to ask you, NASCAR, if this is how you imagined your “championship” to play out. Because these boys are just not acting like champions if you ask me… If you look at you best active champion, Mr. Six-Time, I think you can see the difference.

When Jimmie had a parts failure and was eliminated; he was disappointed but proud of his team. He is a true champion of his sport. Kevin Harvick did not do what a champion should do when his engine failed at the end of the Talladega race. Instead, to ensure he moved on to the next championship round, he wrecked the field, eliminating Junior’s chance to beat Logano fairly and move on. And a black flag to the NASCAR officials who called off the first restart for a do-over because Jimmie and Kyle Larson landed in the grass- there was nobody in harm’s way- and we all know it. Couldn’t live with your one green white checker change- seriously sounds like WWF rules to me.

In the closing laps at Texas, Jimmie and Brad left it all on the track fighting for the win, but raced each other like champions. Jimmie won without spinning his opponent. In nearly the same situation, Joey, who is clearly not a champion, chose to wreck Matt Kenseth in order to eliminate competition- because he had already ensured his place in the next round he could have raced clean for the win and chose not to.  Shame on Brian France for supporting that move. Quintessential NASCAR my fanny.

Matt wrecking Joey out at Martinville was pure joy to watch (and rewatch). Because he had it coming!  NASCAR benching Matt was wrong after they did NOTHING to Kevin Harvick after he altered the end of the previous race. But how could they bench the defending series champion…

(NASCAR also killed Matt’s streak of 571 consecutive starts, which was the second-longest active streak behind the Gordon's 795 in a row. Jimmie Johnson and Ryan Newman have each started 502 consecutive races since the 2002 Daytona 500.)

Icing on the cake was Joey blowing out the back end of his car on lap nine yesterday when his tire exploded- I think the only person happier than me was Matt Kenseth. Points to him for the best post-race Tweet:

''Good work @JimmieJohnson! Textbook pass for the win at the end of the race when someone is trying to take your lane. #quintessential''

And with the Chase format that is supposed to emphasize wins, NASCAR, how are you feeling with the 3 biggest winners of 2015 not being in your final four? Jimmie, Joey and Matt have 16 wins between them. Are you trying to make the championship completely meaningless? Because it is working!

Daisy

Daisy was given to me today at the Cin City Reptile show- she needs to be fattened up but seems pretty well tempered. So that makes 4 for me...

The Constantine Weekend

 

 

 

The Next Chapter

I have worked almost my whole nursing career in grant-funded positions where the need was great- in the South Bronx with children, with the HIV+ population in Yonkers, and most recently with the EB community. I have worked with debra for nine years- it is difficult work, challenging, and bad days are tough. But I love the EB community and have done my best to serve them.

Sometimes it is just time to move on, and I found a new job in Children’s that I think suits me. On the 24^th of August, I accepted and then called my current Executive Director to let him know.

Leaving is hard. Always.

Next came the letter to the Board….

August 27, 2015

Dear Members of the Board,

I am writing to notify you that I have accepted a position at Children’s Hospital  in the Human Genetics Department. I will be working with families who have Neurofibromatosis.

Nine years ago, I was welcomed into the debra family and I cannot express how grateful I have been to have the support of our EB providers, patients, families and the amazing debra staff. I was taught, my questions were answered and information was generously shared. My work with debra has been life changing. Moving forward, I know I am a better nurse for the experiences I have had during my time as the debra Nurse Educator.

As I transition to my new role, I will do all I can to assist the next debra Nurse, just as Madeline Weiner assisted me when I started. My goal, always, is to insure the success of debra and debra’s support of our families.

It was hard to write, and the kind response of gratitude I received warmed my heart.

But the hardest part was yet to come. I had to say goodbye to the families I have worked with for nearly a decade.  I finally finished the final touches and posted this on Facebook:

Hi Everyone, Nurse Geri here. I have some big news to share with you all.

I am transitioning to a new role at Children’s Hospital, working in the Division of Human Genetics. In my new role, I will be working in an ambulatory care setting with families who have Neurofibromatosis, another difficult genetic disorder.

At the same time that I am excited by the new challenges this work will bring me, I am saddened by the fact that I will have a less active role in the EB community. You have all taught me so much. You have shared your stories, your successes and failures and taught me what EB really means in everyday life.  For your support, I will always be grateful. 

I will assist the new debra nurse in any way I can, just as Madeline helped me when I started back in 2006. And I am sure all of you will share all you can so this individual finds the same success I did. Your compassion, honesty, and kindness have helped ease the stress of working with this very complex disorder- we all know it is so much more than a skin disease.

Thank you everyone, for nine amazing years!

So much harder than I imagined. I am excited for my new adventure, but I will miss this work, this world… Change is hard, good-bye is hard. I am waiting for the next chapter to start.

9-11 Memorial

My visit to lower Manhattan was work related, but I am still trying to do new things and I thought that, maybe, finally I could visit the memorial.

You can see the new tower in the skyline and the church is dwarfed by the surrounding structures.

The reflecting pools are beautiful, and perfect reminders of what once stood here. I was grateful to Jason that I was not alone, and thankful he stepped back as I grieved. This was so overwhelming even so long after the fact. It is hard to describe seeing the names of our neighborhood boys etched in steel.

Jay

 Fr. Judge

Muggs

Michael

And to tell the truth, I found it a little disturbing that the atmosphere was more like a carnival than a memorial park- I expected it to be more like the Vietnam Memorial in D.C., but that reverence was missing.  I was not prepared for that.

The Brooklyn Bridge

 I had never walked across the Brooklyn Bridge, so while I was downtown on a recent visit, my friend Jason recommended doing it. He knows I am chasing 50 new things- and has some crazy ideas I may even try out. He joined me for the walk and is my official photographer.

 It is a nice walkway, even if people can't follow simple directions. Dude, when that bike knocks you down, it will be your fault for being in the bike lane. Yup- you can take the girl outta the Bronx...

 The views are so beautiful- the photos just don't do it justice.

 And the structure itself is just amazing- a work of art.

So if you ever find yourself at City Hall, consider walking East to Brooklyn- the views will take your breath away.

TV in the Fall, 2015

TV land has become a disappointment over the last six months.

Covert Affairs was cancelled... Bah Humbug! Unforgettable was cancelled again. Whatever!

Forever was cancelled. My son and I LOVED it and it was cancelled...

CSI ended and I am not sure if anyone noticed. Mad Men ended... I would like to buy the world a Coke!  I also want to sit on Don's couch.

Downton Abbey will have only one more season, and Sherlock is still AGES away...

Some in the TV world went off the rails entirely.

Yes, I am looking at you Shondra Rhimes! I will never watch Grey's Anatomy again after you killed McDreamy- and I have watched since the very first episode.  I stayed with you when Izzy left, George died, and through the plane crash and death of both Mark and Lexie. Even after Christine left, I stayed. This- I am done. You killed more than Derrick. Now I just do not care what happens. Done.

Same goes for Scandal- You jumped the shark with the Olivia kidnapping and I walked away and realized I just don't care. I was Team Jake all the way...  Which you would never let happen, but now I do not care.

I didn't finish watching Chicago PD  season, gave up on Graceland, and don't feel pressed to go back to How to get Away with Murder.

At least the new Walking Dead is coming soon. It is worth watching simply to fill the gap before the  original Walking Dead comes back.

There are a few others like Modern Family and The Big Bang I am looking forward to, but not much to rush home for.

More time to read, I guess!

Believe in yourself right from the start

From The Wiz... so very many years ago...

Dorothy
If you believe
Within your heart
You'll know that no one can change
The path that you must go
Believe what you feel
And know you're right because
The time will come around
When you'll say it's yours

Believe there's a reason to be
Believe you can make time stand still
And know from the moment you try
If you believe
I know you will
Believe in yourself right from the start
You'll have brains
You'll have a heart
You'll have courage
To last your whole life through
If you believe in yourself
If you believe in yourself
If you believe in yourself
As I believe in you

If you believe
Within your heart
You'll know that no one can change
The path that you must go
Believe what you feel
And know you're right because
The time will come around
When you'll say it's yours

Believe that you can go home
Believe you can float on air
Then click your heels three times
If you believe
Then you'll be there
That's why I want you to
Believe in yourself
Right from the start
Believe in the magic
Right there in your heart
Go ahead believe all these things
Not because I told you to
But believe in yourself
If you believe in yourself
Just believe in yourself
As I believe in you

50 New Things- The second 10 plus one...

In keeping with new adventures, I have started the process of registering my foreign birth with the Irish Consulate. This is the first step to becoming an Irish citizen and obtaining my Irish passport. I have a number of documents to compile and get notarized,  and the Chicago consulate warned it could take a year to process, so it is good I got an early start. It is also pretty expensive- $318 dollars to process the paperwork.

I had my very first video interview- it was my third interview and I didn't get the job, but it was an interesting leap into the new century technology.

In the first 10, I tried oysters for the fist time, but they were sauteed and had a lovely sauce on them- so I tried them on the half-shell this time round. They are really nice. 

And in BIG NEWS!!! I will, for the first time ever, have a sister-in law. Granted, I didn't have to do anything, but it is still cool news. Hoping for an Italy wedding- have not been there yet.

The Irish Nursing and Midwifery board processed my application and sent me  my nursing registration paperwork, so I can work in Ireland if the opportunity presents itself, which is exciting.

I interviewed at DebRA Ireland (via Skype)- the position would have me traveling in both the North and South- what an amazing opportunity.

I have also looked at job opportunities in the Middle East. It could help me catch up on savings but it is a whole different way of life.

Just in case- I have started lessons in Arabic- it really is just as hard as I imagined. It is not only a different alphabet, but the reading right to left is totally confusing to me.

In going to the 2015 Mud Summer Classic, I managed to do 3 new things all in one night. I got to see EXCELLENT dirt track racing at Tony Stewart's track just north of Rossburg, Ohio. It was also my first NASCAR truck race, and it was the first racing event I was able to share with my daughter. Chris Bell was a first time winner and we all had a really great time.

Only 29 more new things to fit in before 50. Ready, set, go...

It's a surprise...

I am flying to North Carolina this weekend to attend a surprise party- My friend is turning 60 and her husband and two sons are making it a night to remember.

Her friends are coming from near and far to be a part of the festivities, and between the band, the beach theme, old friends and good food, I am sure it will be a night to remember.

Of course, even though I am writing this on Friday, I am scheduling this post for Saturday after the party starts, just in case she visits here before the big "SURPRISE".

Update: she was surprised and we had a wonderful time!

The Emergency Room

After reading Chanel White's story, To the woman in the er waiting room who told me I was Lucky
I got to thinking about my mom.

Back in 1997, I got a call at work. My mom had been run over by a car... Well that is not exactly accurate. While mom was crossing East Tremont Avenue at Miles, a car making a left turn hit her, knocking her to the ground, and the car rolled onto her chest and came to a stop when the driver, a man in his 80s, panicked.

THANK GOD, a large group of men from the neighborhood raced out of Sebastian's, the pub on the corner, and lifted the car before it crushed her. Carl, who knew Mom, raced to our house to get Dad, and the Fire department and the Throggs Neck Volunteer Ambulance was on the scene in moments. It took a bit to get her out, collared and longboarded. She was then transported to Jacobi, the closest trauma center.

I do not have words enough to thank everyone who was there that day. 

My boss put me in a cab and I arrived at the ER just as mom was arriving. I went back with her to the trauma area and she was assessed for life threatening injuries.

She didn't have any.

My mom was run over by a car and miraculously had only minor injuries. The docs could not believe it and ordered an X-ray series.

I helped clean up her scraped legs after removing her shredded stockings.

She grew irritated that she had to wait so long for x-rays (the doctors were sure she had to have more than a cracked rib and a wrist fracture).

I remember explaining that you never want to be the one getting all the attention in an ER- that meant you were the worst off in the place.

After the wrist fracture and rib fractures were confirmed as the only injuries,  I went out to the waiting area and updated the family- the relief was palpable.

Mom was admitted overnight (again the docs could not believe the minimal impact of the accident) after several hours and was discharged after a couple of days. She had to have significant therapy for her wrist but was otherwise okay.

You never want to be the patient seen first in an ER. You want to be the patient they can wait to see. Ms. White, I wish you well.