Sacrifice

Having a child with a chronic illness can mean a lot of sacrifice.
You sacrifice family time
You sacrifice your marriage
You sacrifice your friendships
You sacrifice your job
You sacrifice fun
You sacrifice vacation
You sacrifice your home
You sacrifice comfort

When you look at that long list of sacrifices it's hard not to be angry and ask 'why us?'  From diagnosis at 20 some weeks gestation to now, I have asked that a lot, why us?  But rarely do I find myself truly angry at our circumstances.  Yes, it stinks to live in hospital and sacrifice but I am not in control.  My strength and patience are due to that alone.....I AM NOT IN CONTROL.  Someone far greater than me is in control.  As we venture into a different kind of hospital stay I think I will be truly tested with both.  The majority of our other stays have started with a surgery and moved onto recovery where small steps are made to getting healthy enough to go home.  Our last two weeks have been getting Lucy in the healthiest state and then we wait and wait some more and wait some more.
Hearing that patients in need of a heart transplant typically wait six to eight months.  That would put us right around Christmas.  Oye.

When we were in route to Lurie's, I was scared out of my mind, the quick turn of events didn't leave a lot of time for processing all that was happening.  In that ambulance ride the only thing I could think to do was message a heart mom who had been down this road and ask for words of wisdom.
Among them she said:
 "Remain present both with your circumstances and in prayer.  Like really, never stop praying."

How true!  If you just focus on the day in front of you, the overwhelming feeling to not know anything of the future fades.  To be able to focus on just the present day, you need prayer, A LOT of prayer, because your mind can so easily wonder down dark paths.

The last week has been more talking. In case you were wondering, I missed a few specialties that have been by to speak with us:
Palliative care
Hepatology (liver)
Pulmonology
Nephrology (kidney)
Infectious Disease
Chaplin

So much talking!  We have been making small changes to get Lucy to her healthiest state.  We are down to two liters of oxygen and we've weaned a medication (bosentan - pulmonary hypertension medication).  Lucy's demeanor has gotten better each day since we arrived,  Her smiles are back, her giggles are back, her sassiness is back.  This is mostly due to the milrinone (in short, it's a medication that helps with the pumping of the heart) and in part that she has been left alone.  I honestly think this is the best she has felt since last May.  She has been a riot, just chit chatting the day away!  Aside from living in the hospital, I have enjoyed seeing her personality re-emerge.

While making these changes, the team has been back and forth about doing another catherization, weighing the risks and benefits.   With her in a stable state, the team felt another catherization to coil some collateral vessels would be helpful.  We were looking to schedule next week, but of course, the week is full.  So today it is and in true fashion, it's not a definite if we will end up actually going.  We are 4th case, which means roughly 2 pm.  We will be NPO (no food or drink) starting at 2 am.  If we are lucky, one case gets cancelled and we are able to go sooner.  If we are unlucky, one or more cases will take long and they will cancel us after not eating and drinking for most of the day.
We hope that this will improve her health even more and we can work to strengthen her muscles, but another procedure, even a catherization is scary.  I always talk to Lucy about what is happening, so last night, I told we were going to have another procedure and that she couldn't eat or drink before and.  She immediately burst into tears and asked who was going with her.  I told her I would be there,

Bless her heart!  This journey is much harder now that Lucy has a better understanding of everything.

Specific prayers that this catherization does not set us back, that any intervention helps and that both her and I are alive after not being able to drink or eat all day!  Yes, I try not to eat and drink while she is unable.

transplant evaluation

I seriously sometimes think this is a dream.  That it is not really happening.  But then I realize, we've spent the last week in the hospital and I haven't seen Connor this whole time and I know it's more like a nightmare.

Surprising to me, transplant evaluation is more talking than anything else.  I thought Lucy would go through a bunch of procedures, but since we got here Friday night, it's only been two.  She had a PICC line placed and had a CT scan.  The rest of the time has been meeting with the people that make up the transplant team.  This includes (but is not limited, as we haven't met the entire team):
Transplant surgeons
Transplant cardiologist
Fellows and residents (it's a teaching hospital)
Transplant APN
Cardiac nurses
Social work
Psychology
Hemotology
Transplant case manager
Occupational Therapy
Physical Therapy
Speech Therapy
Child Life
Education
Finance

One of our first questions when we sat down with the transplant cardiologist was:  'is Lucy going to be a candidate?'  In simple terms, from all initial data:  yes.  Although we have not gotten official word.  At this time we have stated to the team we would like to move forward with listing Lucy for transplant.

We are still learning about this process but here is what I know right now:
Once listed with UNOS , there are 4 statuses of wait list:
1A - child is admitted to the hospital and in need of support for help stabilize
1B - child is admitted or waiting at home depending on medical care needed
2 - child is stable but will eventually need a transplant
7 - child is temporarily unable to receive a transplant (too sick, work up incomplete, etc)

Don't ask why the 4th category is seven.  It doesn't matter because Lucy will be listed as 1A.  That means we are not leaving the hospital until she is matched with a heart and has her transplant.
Average wait time is roughly 3-4 months, however numbers have indicated wait time is increasing and 6-8 months is more reasonable.  Which means in Lucy time, we're looking at possibly year or more to wait.  We could get lucky and get a heart quickly but if history has told us anything, it's to be prepared for the long haul.

The transplant list is also not just a list where you get a number, say we're number 100.  And each time a heart is available and matched, we move up in line .  There are many factors that go into finding a heart: blood type, size, distance of donor and sickness of child.  The team has also told us that their goal is to find the best possible match, so a heart may be matched to Lucy and the team can in essence 'pass' on the heart.  Their goal is to make sure Lucy thrives after transplant and that can only be done with a best fit.  Once Lucy has been matched, the team would review all the information from the donor and if a good match, they would verbally accept the heart.  I believe at this point we would get the phone call that a heart is available (did you're heart drop too?).  The transplant surgeon would then retrieve the heart personally.  Once there, they inspect the heart.  At this point they can still decline, so we also will need to be prepared for false alarms.

Many have reached out to us and family about ways to help.  We are still figuring out ways of help that will be most beneficial for our family.  While we work to create a new normal for our whole family, we ask for prayers of a new heart.  This request is not lost on me.  I realize that in order for Lucy to live and thrive another family has to endure a fate far worse.  And in that dark time, they choose to be selfless.  So along with prayers for that new heart, I would like to add a prayer of peace and comfort for that family that will eventually give us our life back.

unknown

If you could know what the future holds would you find out?   If you did, would it change how you lived right now?  I've always said I hate the unknown, and that if I could know it now, I would want to.  It's why with both kids, as soon the gender was available, we wanted to know.  I'm a planner, I've said it before.  Knowing means being able to plan.  Unfortunately, CHD means never planning.

I never mind the journey as long as I know the outcome and for the most part I would not change how I lived.  Take for instance Mike and I, I knew I would marry him, right from the start.  But it took two break ups and a move across country to get us there.  That was okay, because I knew!  With Lucy, there hasn't been a lot of 'knowns'.  But if there were, I can say I would changed how I lived at least in one instance.  I would have delayed her fontan, to enjoy one more summer of swimming at the pool, playing at the park and enjoying outside.

Will travel for milk!

Since early December we have been working to clear up small issues that we felt were impacting Lucy's fontan physiology.  The first was her lungs and aspiration.  Our second injection in January has worked wonders and she has been taking all food and drink by mouth with no impact to her lungs.  Then we focused on her GI issues.  At our last inpatient stay, we were able to complete a gastric emptying study.  The results came back normal and we have been puke free since mid February.

However, Lucy's declining oxygen saturations have been of some concern and with no signs of distress (increased breathing or retractions) we were scratching our heads.  Dr. Husayni felt that she was healthy enough for a catherization, so we planned to schedule one mid March.  Then last Tuesday, I put her pulse ox on for her morning spot check and it read 49.  YES, 49!  We called Dr. Husayni immediately and after some discussion we felt that pushing up the catherization would give us the answers we needed.


Tuesday afternoon we waited for a bed to open up and drove down to Advocate Children's hospital.  Lucy was put on high flow to help bring up her 02 levels.  We were scheduled for the catherization Wednesday afternoon.  A couple hours before, they decided to postpone a day to bring her INR level down.  Since this was unplanned we did not have enough time to hold her warfarin the recommended 5 days.  She was given FFP (fresh frozen plasma).  FFP is a blood product made from liquid portion of whole blood.  It is to help with her low clotting factors due to her warfarin regimen.  They added some extra diuretics to remove excess fluid on her lungs to ensure the data from the cath was as accurate as possible.  Once we knew she could eat, Lucy got right to drinking milk.  She chugged (2 mL at a time) almost 16 ounces in about 2 hours.




She was rescheduled for first case Thursday morning.  The cath took about 3 hours.  When Dr. Patel came to get us, I got this feeling in the pit of my stomach.  We walked back to the PSHU and sat down with the entire team, so everyone could here the results at the same time.  Sure enough, the cath results showed her lung pressures were high.  He went over more information and then showed some scans from the cath.  Her right lung was barely getting blood flow and her heart function had decreased.  We went back to Lucy's room to find her still intubated.  She was still really groggy from the anesthesia.  As she started to wake up, her first instinct was to pull that tube right out (I don't blame her).  Within an hour or two we were able to extubate.

Around 6 pm, Dr Husayni came to talk to me about our course of action.  Full disclosure, I knew we were headed for transplant evaluation, but I honestly thought we would get discharged and the process was going to take a couple months.  We moved to the waiting room for some privacy.  He went over the results again, but the one thing that stuck out was her low oxygen levels over the last couple months have resulted in early heart failure.  He had spoken with the team and Lurie Children's Hospital and they suggested a hospital to hospital transfer was best for Lucy and insurance.
"So do you want to go tomorrow?  And just like that.....everything changed.
We thought for Lucy, spending the weekend at Lurie's to get adjusted was going to best, so we started the process for transfer to happen Friday.  Our last night at Advocate Children's hospital had to be special, so Lucy had a princess dinner!  Thank you Dr. Penk for stepping in, as no real princesses were available last minute!

Live every day like it's your last.
Many times you see that saying in the wake of a death.  And it's probably true that enjoying everyday is the best way to live.  But that's easier said than done, especially in daily life.  While no one has passed, our life as we knew it pre-Fontan has died and it is a reality, that it will never be the same.  Does that mean it can't get better? No.  However, everything going forward is unknown and that is scary.

perspective

Monday I was having a pity party.  I am sick of the hospital, so is Lucy.  I am tired of Lucy being sick.  Let's be honest, she hasn't been healthy since last May.  Yes, we have good days, but overall Lucy just doesn't feel good which leads to a lot of crying.  This hospital stay, my patience are at an all time low.  I find myself getting annoyed when Lucy is extra 'needy' or is struggling to get comfortable enough to fall asleep.  Then I hate myself for it because she can't help it.  How can a four year cope with everything that's happened in the last year and here I am annoyed?

Then yesterday, from a distance, I watched two parents make a decision to say goodbye to their child.  Siblings and extended family came to comfort and say final goodbyes.  And then they left without their child.  Leaving a void that will never be filled.  My heart ached for them.  My mind easily went to "what if that was us?"

Man, does a day like yesterday change your perspective.  Lucy is alive and although she is not healthy, she is not nearly as sick as she has been.  And I thank God that she is here to annoy me and remind me that when my patience are short, I need to lean on him.

I probably should have foreseen this hospital stay.  About two weeks ago I was checking her saturations and she was resting in the mid sixties.  I immediately called Dr. Husayni's office and after sending a video of her breathing we all agreed that bumping her up to four liters for some extra support was fine.  At her appointment that same week, she showed no signs of distress and she was actually a little silly during our visit.  Then Friday Connor woke up with pink eye and a cough.  Within a day Lucy had all the symptoms too.

Last Tuesday afternoon I noticed Lucy's respiratory rate had increased and that night we were up most of the night coughing.  By Wednesday the cough had gotten even worse and she started retracting.  We spoke with Dr. Husayni again and he did not want to wait until our Thursday appointment, so we made the trip to the ER.  In the ER we drew a blood for a virus panel and electrolytes then tested for the flu.  We headed up to the PSHU that evening on high flow oxygen at 10 liters to watch.  Even on 10 liters during coughing fits she would drop her saturations to the low sixties.  Over the weekend we bounced around on flow, down to three then back up to fifteen and anywhere in between.  They put her on a stronger antibiotic to cover  aspiration and anything that may show up.  However, all tests came back negative.  The likelihood was that it was a virus that did not show up on the panel and we would just have to let it run it's course.

One thing the team was worried about was the injection had worn off and Lucy was again aspirating.
Dr. Sherman stopped up yesterday evening to scope her and look at her vocal cords.  Thankfully what he saw was good news.  She is still getting very good closure.  So we do not have to restrict oral intake!!!!!!  This confirmed that we are probably dealing with a virus.

This morning we moved off high flow to a regular nasal cannula.  We will need 24 hours with no episodes and then we can talk discharge.  While we are inpatient though we decided to go ahead with gastric emptying study to see her stomach motility.   This should give us an idea of what is going on with her stomach and help us to determine if something can be done about the throwing up.



She hasn't been super upbeat while we have been here and that's understandable, but SpongeBob SquarePants made a visit to the unit and we got the biggest smile.






Music therapy and a mustache party have helped a bit, but we really can't wait to get home!

Chaos

If I could describe what life has been like since G tube surgery, it would be chaos.  I am a creature of routine and when I don't have one, it feels like I am spinning.  It's hard to focus on anything.  Each day, hour, minute, it seems there's a list of things to do, but nothing ever gets done.  And it's probably why I have started this post a dozen of times.

Prior to g tube surgery, we had gotten into a nice routine.  Lucy medication and feeding schedule was set, both kids were for the most part sleeping through the night.  I had adjusted my work hours to accommodate Lucy and it allowed me to go to the gym a couple days a week.  Oh how I forgot how therapeutic running was for me.  But after surgery, everything seemed to turn upside down.

During Lucy's recovery over the summer from her Fontan, I had been asked multiple times if this was her last scheduled surgery.  My answer has always been the same:  'Yes, it's the last planned surgery'.
I say that because CHD is unpredictable and for the majority of people with congenital heart defects a transplant will eventually be necessary.  Transplant.  It's hard to describe my feelings when I hear that word.  Prior to the Fontan, it seemed like a distant conversation.  However, during Lucy's December 22nd appointment, I sat in Dr. Husayni's office looking at her awful x-ray and he said it.  We need to start thinking about transplant evaluation.  You think you can prepare yourself.....because transplant is not an 'if' it's a 'when'.  But you're never ready....cue the tears.

Why are we talking about it now?  Most of it stems from diuretics.  We have tried to ween her from the massive amounts of diuretics and have been unsuccessful twice.  We have to start thinking into the future and what it will mean if Lucy cannot handle the Fontan physiology without diuretics.  A transplant evaluation is one of the first steps.  Luckily, her team felt that there were a couple other issues that are impacting the Fontan.  The first and biggest is her aspiration and lung issues.  In simple terms:

-aspiration causes aspiration pneumonia
-pneumonia increases her lung pressures
-high lung pressure creates venous congestion
 *venous blood flow is deoxygenated blood coming back to the lungs.
-Venous congestion means the fluid looks for other places to move

This can mean fluid leaking through the lymphatic system, creating more pressure on the lungs or higher use of the fenestration, which means lower oxygen saturation (and in turn lower profusion to organs).

The second issue is her gut.  Since surgery in May she has been getting less than optimal nutrition.  We all know good nutrition fuels healing.  We were hopeful the g tube would assist in reducing the vomiting, but it's still a once a day thing.

At the beginning of January, her medical team (cardiologist, surgeons, intensivists, APN's, ENT) gathered to discuss Lucy and where we could go from here.  What I wrote above was a majority of what they discussed (but probably with more sophisticated words!).  What came out of it was a plan to eliminate the issues impacting the Fontan using minimally invasive procedures.  As you know, the first procedure was a second injection using a more permanent material.  As with the first injection, we don't know how long it will last (anywhere from 1 month to a year).  We can continue to do injections, but it is not a long term solution, so we are also looking into vocal cord regeneration.

Our second procedure will be a gastric emptying test (not scheduled yet).  This will allow us to see how her stomach is functioning.  Feeding is where I feel most of the chaos comes from.  Since December 6th (our discharge from surgery) we have been adjusting her feeds constantly.  I was so focused on getting her all of her nutritional needs that at first I didn't realize it might be better to only give her what she can keep down.  Add to that some restriction from drinking (at first) and trying to keep her liquid volume around 33 ounces.  I did everything. 6 feeds over an hour, small feeds every 3 hours, half her food via tube and the rest by mouth.  It was almost all consuming.  And the constant waiting for her to vomit, also polarizing.  While we are still vomiting, we have a routine that seems to suit Lucy's need to drink, while getting a majority of her calories.

She gets three ounces of milk/pediasure (alternating) every hour.  She gets tube fed to give her potassium.  The dose is rather high and can upset the stomach, so we give it slowly over 45 minutes.
If she doesn't drink all her allotted liquids, we make up the differences with overnight feeds at one ounce an hour.  It seems that after two months of trial and error we are starting to hit our stride again.
Just in time for Lucy's 4th birthday!

I think my biggest fear is the knowledge that the injection will wear off.  When that happens, will she silently start aspirating again and will we need to go back up on her medications.  There is a possibility her vocal cord never heals and I'm not sure where that would leave us.  It's been three weeks since the injection and we have been able to ween the diuretics a good amount.

So right now, we focus on the good and pray for the following:
~healing for her vocal cords
~increase in appetite so she can eat more calories
~that her body can continue to handle less diuretics

This year

This year has been the hardest yet.  I don't say that lightly either.  I know the first year of Lucy life was hard and it was littered with a lot of 'downs', but the difference is, at the time we didn't know anything else.  We didn't have time at home with Lucy, she didn't have the personality she has developed over the last three years and she didn't have a little brother.  This year has dragged us through the mud.  I sometimes wonder if she will ever be that person she was before this surgery.  I see flashes of her old self, but they are so quickly replaced by tears when I tell her she can't have water or she has to wait x amount of minutes before her next toothbrush dip or we need to do a finger prick to test her coagulation levels.  Yes, that's right.....we got our INR machine, so I have the pleasure of testing her myself.

If you didn't hear, or are not on Facebook, we were back in the hospital for another visit.   It was luckily a short stay and we made it home for Christmas, but it was just another reminder that although we are home, Lucy remains sick and fragile.

A week before Christmas, Lucy woke up in the morning and her mouth was all bloody, her lips were cracked and so dry.  We consulted with her cardiologist and decided to drop her diuretics on Tuesday knowing that we had an appointment on Friday to see Dr. Husayni.  It's no secret that she is on a lot of diuretics and because of the aspiration pneumonia that kept us in the hospital during her G tube surgery, she has been very limited in her oral intake.  Couple that with the decrease in her feeds because of her vomiting and she was super dry.  Wednesday and Thursday she wasn't herself, coughing a lot and more tired than normal.  Friday morning we packed up and headed to the hospital for her appointment.  She looked worse for wear.  We started with an echo to look at heart function and check for effusions.  Unfortunately, we could not see much fluid, so an x ray was ordered and it looked bad.  On all accounts we should have been admitted, but given it was a couple days before Christmas, we thought going back up on her dose of bumex (diuretic) would hopefully clear everything up.   As a precaution, the intensivist that was on over the weekend came down to look at Lucy.  It gave them a baseline.  We left and I was to send a picture of Lucy the following morning for them to review.  We didn't even make it to the morning.  Around 5:30 pm Lucy was still not herself, so we put on the pulse ox and her saturations were in the low 60's.  I immediately called the PSHU to let them know.  We were told to wait an hour to see if they would come up to her baseline of 73.  In that hour, we packed a bag.  An hour passed and nothing had changed, her saturation had actually lowered (upper 50's, very scary).  We packed the car and headed to the hospital.

We got to the hospital and were admitted directly to the PSHU.  Lucy opted for a wheelchair instead of a wagon.  When we got up to the ICU, Dr. Sajan looked at Lucy and was almost puzzled as to why we were there.  Physically she looked pretty good, so we put on a pulse ox and it read 55.  We needed to place an IV, but when we tried, Lucy went ballistic and dropped her saturations into the 30's.  We ordered versed and decided that nitric was necessary.  Seriously, versed is nothing to Lucy at this point.  She screamed bloody murder through all of it (as I held her down).  A couple doses of IV diuretics, some antibiotics and nitric and within twelve plus hours she was back to her norm.  We decided after weaning the nitric and switching back to oral meds, we would give her one more night to monitor and then home.  Just in time to host Christmas eve and for Santa.

We believe this episode was caused by aspiration, clouding her lungs and making the weaning of diuretics impossible.  With Lucy's oral intake at a minimum, her aspiration has to be mostly from vomiting.  So here we are, December 29th, headed back to the hospital for another procedure that will require us to stay overnight at the hospital.  I would not have thought we could have squeezed another stay at the hospital this year but.......we are first case for a vocal cord injection.  We are hoping that the injection will in essence, pump up her left vocal cord and allow the right side to compensate to fully close.  What does this do?  When Lucy goes to swallow, this will close her vocal cords completely closing off her airway and allowing all liquid to go down her esophagus to her belly.
I'll write more later when I have had time to process.  In the meantime we very much need prayers that this procedure will work.  This is a temporary fix which could not work at all.  There's a chance it lasts a year, but the likelihood is it lasts closer to 3-6 months, in which we would need to go back and do another injection.

Specific prayer requests
~vocal cord injection works and lasts a year
~there are no complications and we are discharged on Saturday
~After the procedure we can start to allow her to drink liquids

Red Tie

In 2014 the Children's Heart Foundation held their first Red Tie Ball, even though Lucy was in the hospital at the time, we were able to attend.  I fell in the love with the event for a few reason:

1. Obviously.....raising money for CHD research.  Without this funding, advancements that have helped children like Lucy live past their first birthday and some into adulthood would not be possible.
2. A night out with my husband.  Anyone with children will tell you they can put strain on a marriage.  When you add a chronic illness and A LOT of time spent apart due to splitting time at the hospital that strain can multiply.  So "nights out" however infrequent are so important
3. Honoring those in the medical field that have had an impact on our lives.  I think sometimes in the wake of critical illness, the doctors, nurse practitioners and nurses take a back to seat to ups and downs of this journey.  The Red Tie Ball is a perfect setting to celebrate them.

The past two years, Lucy's doctor's have been recognized.  Her surgeon, Dr. Ilbawi and her cardiologist, Dr Husayni.  This year, Sarah, a nurse practitioner in the PSHU was honored with the Heart of Gold Award and I was humbled to be chosen to introduce her.  Her impact is beyond words, but I tried hard to encompass how much she means to our family.

Here is what I said:

Roughly four years ago, my husband and I stepped into Advocate Children’s hospital for the first time.  Unbeknownst to us, this hospital would become our second home.  Our daughter, Lucy was diagnosed Hypoplastic Left Heart Syndrome and she has done nothing by the book.  At one of our first appointments, I remember asking about recovery time, little did I know those numbers would never apply to us.  Lucy made us wait two months in the hospital before she was ready for her Norwood.  A routine catherization turned into an extra surgery and this summer after her Fontan she made us go back to the operating room to fenestrate, TWICE.  We have spent a good amount of time in the hospital, so it’s no surprise that the staff also became our family.

I met Sarah in 2014, during our first inpatient stay with Lucy.  While we didn’t have a lot of interaction, I have one memory of her from that time. We are standing in bed 6, quickly approaching 90 days in the hospital.  Lucy was technically not critical, but she cried a lot which was keeping us in the ICU.   We were discussing a move to the floor and Sarah looked at me and said,

"We would send Lucy down to the floor, but they will call up every time she cries.   If you want Lucy to move down there, you’ll have to move into the hospital."

Sounds like a dare, right?  Over the summer I had the opportunity to get to know Sarah.  What sounded like a dare, was just the truth.  My daughter was going to need someone to be with her 24 -7 and Sarah knew that.

Her brutal honesty coupled with her wit and humor help to soften the blow of the reality that is CHD.  It’s what kept me grounded over our 100 day hospital stay. It’s what put a smile on my face at least once a day.  How do you tell a mom whose been bedside for 60 days, there’s no way you’ll be out of the hospital in the next month and still make her smile.  That is Sarah.

Aside from her humor, her knowledge and ability to explain all things medical to a parent that is just trying to survive is impeccable.   Sarah spent countless hours in Lucy’s room discussing all of her issues, the approach and alternatives, medication and their impact, reviewing x-rays until I was comfortable in my understanding.  I often get complimented on how much I understand, and that is a credit to Sarah.

All these characteristics make Sarah an amazing nurse practitioner, but what truly makes her heart gold is her passion for her kids.  She is a fierce protector and advocate of her patients.  She has protected Lucy through and through, and she has stood in when I couldn’t be in the room……two trips placing NJ tubes, a bedside upper GI, an ENT scope and the removal of five chest tubes at the same time.  Lucy has some serious anxiety when it comes to the hospital.  But every time we go for an appointment or labs, one of the first things she says is ‘where’s my new friend Sarah?” and that is proof that Sarah’s impact far extends the hospital room.

I am honored to present this award to Sarah because from a parent and patient perspective she truly exemplifies a heart of gold.

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 As I saw Sarah surrounded by families and colleagues at this event, it is clear she is respected, admired and loved.  I am truly grateful for her knowledge, her input, her humor and her friendship.