Our Heart Journey

HELLO!

I created this separate page that pulls all our heart posts together in one easy-to-find area that document this absolutely wild journey that our little family has been on. One of the biggest things that helped me in the beginning when we first were told of our little girl’s diagnosis – Pulmonary Atresia with VSD (and then later added MAPCA’s), was reading (like an obsessive amount) other people’s blogs and their own CHD (congenital heart defect) stories and connecting with other families who are in similar circumstances. I began blogging years ago (when Nick and I were first dating), with the purpose of documenting our family’s adventures – essentially a mixture of my journal/scrapbook to share and update our friends and family on what we’ve been up to - so it was only natural to blog about #EvannasSpecialHeart, as it’s become a center focus of our daily life.


SYNOPSIS

Our beautiful daughter Evanna was born with a rare and extremely complex congenital heart defect called Tetralogy of Fallot, with Pulmonary Atresia, ASD, VSD + MACPCA’s. After enjoying a blissful 5 months at home, we handed her over into the arms of our surgical team for her first open heart surgery on October 6, 2014. She went into the surgery relatively “healthy”, and overall we were expecting a 6-8 week hospital stay. While the surgery itself went well, we unfortunately experienced setback after setback (mostly airway related) and complication after complication that would keep us in the ICU for 10.5 months for a total of 400 days in hospital.


To date, our daughter has now had 10 surgeries – 3 additional open heart surgeries, a major left thoracotomy (ie. it was a heart surgery done from the side), 2 diaphragm plications, a tracheostomy, Gtube placement and a sternal debridement, among countless other procedures and tests. She coded 3 weeks after her first open heart surgery, experienced a very scary mechanical valve failure (it clotted in an almost closed position), an acute liver failure episode, and complete Septic Shock episode last July (2015) that almost (and should have) took her life. We were finally discharged on November 9, 2015, and have been enjoying having our whole family sleeping under the same roof once again.


Evanna is currently doing quite well despite all the circumstances. Our admission was extensive, and so the “recovery” will essentially take years; however, she is blowing our medical team out of the water and already surpassing their expectations.


As for her future, we unfortunately will never be given a guarantee (but I try to think that no one in life has a guarantee). We believe decannulation (weaning of the home vent and taking the trach out) will happen sometime in the next few years – but it’s Evanna’s “special heart” that will unfortunately be her life time battle (this disease will eventually kill her to say the least). At the moment, a heart transplant is not an option for due to unique anatomy issues (though I must clearly state that a transplant is in no way a cure), and there is only so much our medical team can do – so it’s mostly up to Evanna and her body to keep fighting, but it’s our job as her parents to continue to advocate for her and ensure she receives the best care possible.


What is Tetralogy of Fallot, Pulmonary Atresia with a ASD, VSD + MAPCAs?



Tetralogy of Fallot: This part of her diagnosis is a bit more common in regards to heart defects, so generally anyone with a medical degree has heard of Tetralogy of Fallot. Tetra means “four” and it generally involves four abnormalities of the heart that commonly appear together.

Overriding Aorta: The aorta is positioned directly over a VSD (the hole in her heart), instead of the left ventricle. This results in the aorta receiving some blood from the right ventricle, causing mixing of oxygenated and deoxygenated blood, and thereby reducing the amount of oxygen delivered to the tissues.

Pulmonic Stenosis: This just means narrowing of the Pulmonary Artery. Evanna actually Pulmonary Atresia, which means she doesn’t have a pulmonary artery at all (which is considered the worst degree of TOF). I’ll talk more about this further down.

ASD, VSD: Atrial Septal Defect and Ventricular Septal Defect. This basically just means that Evanna has a hole between her top and bottom heart chambers. This also causes mixing of oxygenated and deoxygenated blood, and thereby reducing the amount of oxygen delivered to the tissues. Many people are born with a ASD or VSD and it’s considered a very common CHD (congenital heart defect). Some will close up on their own within the first year, while others are so small that they don’t require any surgical intervention, and some require open heart surgery to close it. This also is what allowed us to take Evanna home after she was born, because even though she has a severe heart defect, her body does receive a relatively good amount of oxygenated blood at the moment. You may hear me talk about her oxygen levels (at the moment she maintains levels in the mid-80s), and that just indicates how much oxygen her body is receiving. A normal person has oxygen levels of 96 – 100.

Right Ventricular Hypertrophy: The right ventricle is more muscular than normal. Due to the misarrangement of the external ventricular septum, the right ventricular wall increases in size to deal with the increased obstruction to the right outflow tract.



Pulmonary Atresia with a VSD: I’ve already discussed what a VSD is (a hole in the bottom part of the heart). Pulmonary Atresia is when the pulmonary valve fails to develop. In a normal heart, the pulmonary artery is what brings the blood to the lungs to be oxygenated. A conduit (ie. a tube) will have to be inserted into Evanna’s heart in place of the pulmonary artery, but these have to be replaced every few years as her heart grows, and even when she’s an adult if the conduits begin to develop obstructions like clots, scarring or calcification. Many people ask how many surgeries Evanna will have to have, and this is the sole reason I can’t answer that question as she could have open heart surgeries all her life to replace conduits.


MAPCAs: Major Aortopulmonary Collateral Arteries. This is what makes Evanna’s heart extremely complicated, rare and special. If you hear me talk about her collaterals – this is what I am referring too. Because her heart did not develop a pulmonary artery and ductus arteriosus, her heart made its own little pathways to the lungs called MAPCAs (ie. collaterals). They are tortuous vessels that arise directly from the aorta or its branches. MAPCAs can vary in number and origin, follow circuitous routes to reach central, lobar, and segmental pulmonary arteries, and have variable areas and locations of stenosis (narrowing). Their pattern is unpredictable and often incomplete, leaving some lung segments with excessive or insufficient flow, and they can become narrow over time. As a result, a given segment of the lung may be supplied solely from the true pulmonary arteries, solely from the MAPCAs, or both. The morphology of the MAPCAs plays a critical role in determining management decisions. The aim of treatment for MAPCAs is to group them together and convert their supply to deoxygenated blood from the right side of the heart. Please note that this is the reason Evanna cannot have a heart transplant. The collaterals make her heart and lungs very intertwined, so the only way she could have a transplant is if they did a heart and lung transplant, which is unheard of for babies. I believe the youngest successful heart and lung transplant done here in Alberta was on a 4 year old girl. Basically Evanna has to make do with the heart she was given for the time being.

Other: Evanna also has a right-sided aortic arch verses a left-sided arch. This basically just means that the aorta comes down the right side instead of the left. This isn’t really a big deal, but just something to take note of.
 
 
Our Journey

{December 18, 2013} The Diagnosis
{January 16, 2014} 24 Weeks & Emotional Rollercoaster
{February 4, 2014} Blessings, being Realistic & keeping things in Perspective
{February 15, 2014} 28 Weeks & facing so many unknowns
{March 13, 2014} 32 Weeks & Edmonton Appointments
{March 28, 2014} 34 Weeks & Ultrasound Updates
{April 9, 2014} 36 Weeks
{April 29, 2014} Birth Announcement
{May 12, 2014} Evanna's Birth Story
{May 20, 2014} Edmonton and Calgary NICU
{May 23,  2014} Good News (Evanna has T-Cells!)
{June 10, 2014} Heartache
{June 27, 2014} Cardiology Update
{July 3, 2014} 22q11 | DiGeorge Syndrome Confirmation
{July 28, 2014} Evanna's Special Heart
{August 5, 2014} Evanna's First Cath/Angiogram
-------------------------------FIRST OPEN HEART SURGERY-------------------------------
{October 5, 2014} A Different Kind of Eve
{October 6, 2014} Surgery Update 
{October 7, 2014} PCICU Day 2 
{October 8, 2014} PCICU Day 3 
{October 9, 2014} Chest Closure
{October 11, 2014} PCICU Day 5 & 6
{October 13, 2014} PCICU Day 7 & 8
{October 15, 2014} Extubation Fail
{October 17, 2014} PCICU Day 11 & 12
{Ocotober 19, 2014} Answers & Longer Hospital Stay
{October 21, 2014} PCICU Day 15 & 16
{October 24, 2014} Extubation - FINALLY!
{October 26, 2014} PCICU Day 20 & 21  
{October 28, 2014} Code Blue
{October 31, 2014} PCICU Day 24, 25 & 26
{November 2, 2014} Another surgery and possible transport
{November 4, 2014} PCICU Day 29 & 30 (Mama Bear)
{November 6, 2014} PCICU Day 31 & 32
{November 8, 2014} PCICU Day 33 & 34 
{November 12, 2014} PCICU Day 35, 36, 37 & 38
{November 16, 2014} PCICU Day 39, 40, 41 & 42
{November 22, 2014} Another Intubation, New Plans and Bad News
{November 26, 2014} Back to Edmonton we go!
{December 1, 2014} Holding Pattern
{December 5, 2014} PCICU Day 58, 59, 60 & 61
{December 8, 2014} Surgery #3
{December 12, 2014} PCICU Day 65, 66, 67 & 68
{December 15, 2014} PCICU 69, 70 & 71
{December 18, 2014} Plan J?
{December 20, 2014} PCICU Day 75 & 76
{December 23, 2014} PCICU Day 77, 78 & 79
{December 27, 2014} PCICU Day 80, 81, 82 & 83
{December 30, 2014} PCICU Day 84, 85 & 86
{January 2, 2015} PCICU Day 87, 88, 89 & 90
{January  5, 2015} Surgery Tomorrow
{January 10, 2015} PCICU Day 94, 95, 96 & 97
{January 18, 2015} PCICU Day 98 - 105
{January 24, 2015} PCICU Day 106 - 111
{January 28, 2015} Another Extubation?
{February 1, 2015} Sixth Extubation
{February 5, 2015} Another Open Heart Surgery
-------------------------------SECOND OPEN HEART SURGERY------------------------------
{February 9, 2015} 5th Surgery Details
{February 11, 2015} PCICU Day 128 & 129
{February 16, 2015} PCICU Day 130 - 134
{February 22, 2015} Surprise! Calgary Transfer
{February 25, 2015} PCICU Day 136 - 143
{February 26, 2015} STARS Transfer to Edmonton
{February 27, 2015} Mechanical Valve Issues
{March 1, 2015} TPA Results
{March 4, 2015} Emergency CT and Bronchoscopy Results
{March 5, 2015} Can't catch a break - More TPA
{March 9, 2015} Tracheostomy Decision
{March 10, 2015} Surgery #6 Tracheostomy
{March 15, 2015} PCICU Day 158, 159, 160 & 161
{March 18, 2015} All things Trach & Transfer
{March 22, 2015} ECMO Alert Update
{March 25, 2015} Liver Problems
{April 2, 2015} PCICU Day 172 - 179
{April 12, 2015} Easter Weekend, Mechanical Valve Issues and ECMO Alert (again)
{April 13, 2015} Waiting for 3rd Open Heart Surgery
{April 19, 2015} Trach Change & Surgery Date
-------------------------------THIRD OPEN HEART SURGERY-------------------------------
{April 21, 2015} Surgery #7 Update
{April 23, 2015} PCICU Day 199 & 200
{April 27, 2015} Calgary Bound! Surprise!
{May 4, 2015} Spreading Sunshine {Birthday Week}
{May 9, 2015} A Terrible Day
{May 10, 2015} Another STARS Transfer
                          PCICU Day 217
{May 11, 2015} PCICU Day 218
{May 16, 2015} Cardiac Cath Plans
{May 21, 2015} Cardiac Cath Results
{May 28, 2015} 3D CT Results
{June 11, 2015} Our First Walk!
{June 18, 2015} Home Ventilator and Progress
{June 28, 2015} PCICU Day 258 - 266
{July 16, 2015} Septic Shock
{July 26, 2015} PICU Day 285 - 294
{August 17, 2015} Slow & Steady
{August 24, 2015} OUT OF PICU - FINALLY!
{September 9, 2015} Life on Unit 2
{October 10, 2015} Our First UNACCOMPANIED Walk!
{October 28, 2015} Anniversary of October 28
{November 30, 2015} DISCHARGED
---------------------------------------  DISCHARGE ---------------------------------------
{December 6, 2015} Cardiology/FEES/New Pediatrician Update
{December 17, 2015} Surgery #8 Update
{December 21, 2015} Cardiology + GTube Surgery Update
{March 10, 2016} Winter Update
{May 12, 2016} the bump + other updates
{June 29, 2016} may's bronch + summer plans
{July 1, 2016} then and now
{September 14, 2016} goodbye summer || HELLO FALL 
{September 20, 2016} Shooting for the || MOON + STARS ||
{October 23, 2016} ENDOCARDITIS, A COLD + "THE TALK"
{October 29, 2016} HPTP Training + 4th Open Heart Surgery
{November 3, 201} || halloween + cardiac clinic ||
{November 7, 2016}|| housebound ||
{November 9, 2016} || first HOMEVERSARY ||
{November 29, 2016} || NEW SURGERY DATE + NEWS FROM CALIFORNIA ||
-------------------------------FOURTH OPEN HEART SURGERY-------------------------------
{December 31, 2016} || a little christmas miracle ||
{January 8, 2017} || 2016 + why I'm so nervous for 2017 ||
{February 2, 2017} january happenings -- postop mayehm and last minute hospital admission
{March 6, 2017} passing the swallow study
{March 11, 2017} happy 2nd tracheoversary
{April 4, 2017} bronchoscopy results
{June 12, 2017} respiratory update

History of Important Events
April 29, 2014 – Evanna was born
July 2014 – 1st Cardiac Cath (Diagnostic)
October 6, 2014 – 1st Open Hea
rt Surgery [Surgery #1]
October 28, 2014 – Cardiac Arrest
November 2014 – Right Diaphragm Plication [Surgery #2]
November 2014 – Calgary Transfer
December 2014 – Edmonton Transfer
December 2014 – 2nd Cardiac Cath (Diagnostic)
December 2014 – Major Left Thoracotomy (Heart Surgery) [Surgery #3]
January 2015 – Right Diaphragm Replication [Surgery #4]
February 2015 – 2nd Open Heart Surgery (Mechanical Valve Placed) [Surgery #5]
February 2015 – Calgary Transfer
February 26, 2015 – Mechanical Valve Clotted/Emergency STARS Edmonton Transfer
March 2015 – TPA Mechanical Valve x2
March 10, 2015 – Tracheostomy [Surgery #6]
March 22, 2015 – Acute Liver Failure (Precardiac Arrest)
April 11, 2015 – Mechanical Valve clotted for 3rd time
April 21, 2015 – 3rd Open Heart Surgery (Mechanical Valve switched out for a bovine) [Surgery #7]
April 27, 2015 – Calgary Transfer
May 10, 2015 – 2nd Emergency STARS Edmonton Transfer (Sepsis Infection)
May 21, 2015 – 3rd Cardiac Cath (Procedural)
June 2015 – Home Ventilator

June 11, 2015 – First walk since October 2014
June 29, 2015 – Calgary Transfer
July 1, 2015 – Sepsis Shock
August 24, 2015 – Moved out of the PICU after 323 Days!

August 27, 2015 – First sleeper!
September 2, 2015 – Officially line (IV, PICC, Arterial, Central) free!
October 5, 2015 – Successfully transitioned to an uncuffed trach (Hit Day 365 in hospital)
October 6, 2015 – 1st Heartiversary
October 10, 2015 – First UNACCOMPANIED Walk!
November 9, 2015 – DISCHARGED on DAY 400
January 14, 2016 – GTube Surgery [Surgery #8]
April 6, 2016 – Edmonton Transfer
April 7, 2016  Debridement and drainage of Sternotomy [Surgery #9]
April 14, 2016 – Calgary Transfer
May 16, 2016 – Bronch + Planned ICU Admission
August 2016 – Stollery HEROS Magazine Cover [click HERE and HERE for more]
October 2016 – Referral sent Dr. Hanley at LPCH in California
December 11, 2016 – Edmonton Transfer
December 12, 2016 – 4th Open Heart Surgery [Surgery #10]
December 21, 2016 – Calgary Transfer
December 23, 2016 – Discharged for CHRISTMAS!
April 5, 2017 – Bronchoscopy [that had VERY favorable results and resulted in our very first big vent wean]
May 10, 2017 – approved for 1hr sprints 2x/daily
June 7, 2017 – approved for 2hr sprints 2x/daily
June 15, 2017 – 4th Cardiac Cath (Diagnostic)


Interventions

Open Heart Surgeries: 4
Other Surgeries: 6
CATHS: 4 (July 2014, December 2014, May 2015 + June 2017) 
Bronchoscopies: Multiple 
MRI: 2+ 
CT: 12+
Fluoroscopies: 5
ECHOs: countless...
EEG: 1
Ambulance Rides (Air & Ground): 12
Days in ICU: 9 + 323 + 1 + 8 + 3 + 7 + 2 + 1
Total Nights Spent in Hospital: 
9      [April 29, 2014 - May 8, 2014]
2      [June 21, 2014 - June 23, 2014]
400  [October 6, 2014 - November 9, 2015]
2      [January 14, 2016 - January 16, 2016]
18    [April 4, 2016 - April 22, 2016]
3      [May 16, 2016 - May 19, 2016]
23    [October 5, 2016 - October 28, 2016]
23    [December 1, 2016 - December 23, 2016]
2      [February 3, 2017 - February 5, 2017]
1      [April 5, 2017 - April 6, 2017]
3      [June 13, 2017 - June 16, 2017]
486  [TOTAL]    


FAQ

BLOG Q&A's
May 19, 2015 || Another Q&A
September 14, 2015 || FAQ Video [Part 1]
September 27, 2015 || FAQ Video [Part 2]
September 25, 2016 || Spotlight Q&A

OTHER
1) Why the Stollery/Edmonton?
This is probably the most common question we get. Though we live in Calgary, home to 4 major hospitals and 1 children’s hospital, the Stollery Children’s Hospital in Edmonton is where we have to go for all major cardiac procedures, as that is their specialty, and they cater to Western Canada. I believe the children's hospital in Vancouver also does pediatric open heart surgeries, but they still send their complicated cases to Edmonton.

2) Is there anything I can do for you?
Yup – there’s plenty YOU can do for us. Just keep scrolling down and read “How YOU Can Help” section of this page.

3) Is it alright for people to hold or touch Evanna?
Evanna thankfully has a decent immune system (it’s been checked). So as long as you are not sick (a simple cold could land Evanna in the ER, and even a hospital admission) and practise good hygiene, we don’t mind. Other than her complicated heart, she’s just like any other baby.
** On that note: Weeks leading up too, and post a major surgery, this rule will change to keep Evanna healthy and strong. If Evanna has even the slightest cold, surgery will get postponed for a significant amount of time, and we don’t want anything to hinder a quick and speedy recovery either. Her heart and body will be so fragile after open heart surgery, and we wouldn’t want anything to jeopardize her weak (but special) heart. So excuse our absence during this time.

4) Can her heart just fix itself?
We got this question a LOT in the beginning, so that’s why I’m addressing it. Lots of people tell us that they know so-and-so who had a hole in their heart that closed up on its own and they’re fine. Good for them (honestly!), but I wish it was that easy. Unfortunately, while this is true for some cases, Evanna’s heart is so much more complicated than a hole. I wish it was just a hole. For starters, she’s missing an entire pulmonary artery! There is obviously more to it than that, but I’ve already covered that on this page, so I’m not going to get into it in this section.



How YOU Can Help

As the date for Evanna’s first open heart surgery approaches, I have been getting a lot of people asking me what they can do to help, so I’ve thought about it and came up with a list:

+       Donate blood! Evanna has had MANY transfusions, and I'm sure she'll need more in the years to come. It’s such a simple thing to do, and only requires about an hour of your time. So what are you waiting for?

+       Are you a runner and enjoy marathons? How about a fun family walk? Live in Calgary? If so, you’re in luck! Every October the Calgary Heart Beats Children’s Society holds a Family Fun Run, with proceeds going directly to helping children born with congenital heart defects and their families. I can personally tell you that Nick and I have TWICE now received an envelope containing gas and grocery gift cards every time we’re required to go to Edmonton for a major procedure. Though this year we can’t participate because Evanna will be in the middle of recovery, I can’t wait to participate next year! Clink HERE for more information and to register.

+       Volunteer. Find the closest Ronald McDonald house, and find out how you can get involved! Whether it’s by donating some groceries, baked goods, or extra event tickets that you won’t use and another child and their family could enjoy (ie. hockey, football or baseball game). Gather a group of friends and family members and be a part of their “Home for Dinner” program by cooking up a meal for families currently staying there. This was probably our favourite thing about the Ronald McDonald house. Families staying at these houses are going through such a stressful time, and having a meal prepared makes such a difference – it enables the family to concentrate their time on getting their sick child healthy again. Once things settle down, our family plans on doing this on Evanna’s “heartiversary” for the Calgary Ronald McDonald house. I know most Ronald McDonald Houses have “Wish Lists”, and they specifically list items they need (and what they don’t need). Click here for Edmonton’s Wish List, and here for Calgary’s. I know I get readers from around the world, so don’t hesitate to look up what your local Ronald McDonald house is in need of!

+       Donate! CHD research is severely under-funded. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

+       Organ Donation. Just at least think and ponder about it. There are so many babies and children waiting for a new heart, and knowing that this precious gift comes from a time of tragedy and sorrow for another family weighs heavily on them. Though Evanna can’t have heart transplant because of her type of defect, I still want to bring attention to organ donation because of how many heart families I know that would greatly benefit from it.

+       Educate yourself. Before I was pregnant with Evanna, I hadn’t heard much about congenital heart defects, nor how common they were (1 in 100 babies are born with a heart defect). Now I feel like every time I turn around, I meet someone who either has a heart defect or know someone who does. Learn the language. I might speak in acronyms like ECHO, CATH, ECG, etc It’s okay to ask me what they mean – or better yet – Google them.

+       If you are pregnant, or know someone who is – understand the importance of the detailed ultrasound (done usually around 18-20 weeks) and ask questions! Do you see 4 chambers? How about the blood flow? Etc.
Days leading up to our ultrasound, I was soo excited to find out if we were having a boy or girl, but the detailed ultrasound is so much more than that. Not all CHD’s are caught prenatally. I’ve meet a few heart moms who didn’t know their child had a CHD until after their baby was born and I am so glad that we had our detailed ultrasound done at one of the best diagnostic imaging facilities in Calgary with highly trained technicians. After your baby is born, watch for signs. Is a murmur heard? Are they breathing fast? Any retracting close to the ribcage? Are they having a hard time eating? Any bluing in the feet, hands or around the mouth? I am not trying to scare anyone, but if you think something is off or not right, share your concerns with your doctor!

+       Prayers. We’ve have seen the power of what fasting and praying can do – so really, that’s what we need the most. Don’t pray? That’s okay – we’ll accept positive thoughts too! Whatever it is that you do to help get through a tough situation, please send our way! 

+       We are not asking for handouts but I know there are some people who really want to know what they can do directly for our family. Honestly, because of our healthcare system (I will never complain about taxes again), this hasn’t been too much of a financial burden for our family. I may not go back to work in a full time capacity as quickly as I anticipated – but that’s okay, we’re fine with me going casual. However our trips to Edmonton can get a little expensive, so if you REALLY feel inclined to do so – we won’t say no to gas gift cards.

Acknowledgments

Family – Nick and I are very blessed to be surrounded by extremely supportive family that are available to help in a moment’s notice. Our parents, grandparents, siblings and extended relatives are always eagerly waiting to hear of the newest updates, and be there if we need them.

Friends – It is during life’s highs and lows that you begin to figure out who your true friends are. They are the ones who celebrate the major accomplishments, but are also there during the tough times. I am glad to say that we have an awesome circle of friends (I’m grouping church friends and leaders into this category as well!) who deeply care about us and have reached out in support. Please know that you’re support doesn’t go unnoticed, and I only hope that you feel the same love from us in return. Each visit, phone call, text, message, Facebook and Instagram comment is special to us, and helps us to not feel alone.

Maternal Fetal Medicine Clinic (Calgary) – This was the clinic that detected our baby’s heart defect and the team there is truly amazing. Their ultrasound and ECHO techs are super talented and so welcoming and inviting. The specialists (perinatologists, cardiologists, etc.) are extremely knowledgeable and take the time to explain everything and answer any/all of our questions without making you feel rushed.

Dr. Fruitman (Calgary)
– She was the first pediatric cardiologists that we came into contact with, and was the one who officially gave us the diagnosis of Pulmonary Atresia with VSD while I was pregnant. She was so kind and caring, and we just really like her. She now looks after and monitors Evanna here in Calgary and will do so until she is an adult.


Stollery PCICU – I honestly couldn't say enough good things about this unit. From the amazing staff (clerks, nurses, RTs, social workers, etc) to the knowledgeable cardiologists, intenstivts and surgeons. They greet you with open arms (I get hugs every time we go back) and reassure you that your child is in the best hands. I have to particularly shout out our favourite intenstivts Dr. Cave (our primary), Dr. Duff, Dr. Ryerson and Dr. Aditia – these 4 took particular interest in Evanna, and generally cared for her and our family.

Dr. Rebeyka – We got to know him very well with our very prolonged stay, and we are forever grateful for him and the work that he does. He is truly dedicated to his patients, and often came to check in on Evanna while we were admitted in the PCICU. He listens to your concerns and will explain the reason to any decisions that he makes. We look forward to continuing a relation with him moving forward, and always feel comforted knowing that Evanna is being cared for by the best!

Dr. El-Hakim | Dr. Eksteen – Going into Evanna’s first open heart surgery, we would have never thought that ENT would become a huge part of our journey, but we’re lucky to have Dr. El-Hakim, and now Dr. Eksteen on board, and be some of the most caring physicians we have ever met. While in the PCICU, they come by on almost a daily basis to check in on Evanna and see how she was doing. Her progress was incredibly important to them, and we will be so ever grateful for their skills and compassion.




updated 19/06/2017

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