Coming Home: Asianae’

Asia 2 Asia 3

 

I am a mother to a very special three-year-old girl who has blossomed into such a beautifully, strong flower (purple, her favorite color) in the past three years. Asianae’ has been on a long journey since birth.

 

By Danielle Ficocelli, Asianae’s mom

She came into the world premature at 4lbs 6oz on May 11, 2010. From that day, I knew, as a mother, there was something wrong with her. I left many pediatricians and insisted on seeing a specialist until I found answers. We ended up at Connecticut Children’s Medical Center, seeing a wonderful Neurologist. Finally at 9-months-old my answer was given, “Asianae’ had suffered a stroke” and the MRI proved that.

The wonderful genius of a doctor (I thank him with all my heart) that saw us that day, has continued on this intense roller coaster with us. Connecticut Children’s was and still is Asia’s second home and we are grateful for all the amazing doctors, from G.I. to ENT, Ortho and Hemoc that follow her still today. This team has watched Asia grow, helping her to reach goals and set new ones, which keep her moving forward. Like the ER team, who cared for Asianae’ when she needed them the most.

As a baby, Asianae’ was continuously gasping for air. We were not aware at the time, but tests at Connecticut Children’s would show that her esophagus had not fully developed. When she didn’t sleep and instead had unusual starring spells that lasted well into the day, the ER team put another piece of the puzzle together, ruling out seizures and concluding it behavioral.

This led us down another path, but helped to answer questions that would follow as she grew older and the difficult time we would experience. I can go on and on about “OUR” endless emotional journey that we have been on with Asia. From the thought of not knowing if or when she would walk, to her being able to use her left hand and most recently, her unique behaviors that today I have grown to accept and LOVE. Asianae’ is the strongest, most determined, charming little girl I have ever known. Today, after 3 long years of continuous doctor appointments, therapy sessions, Botox injections, different AFOs (shout out to HANGER),hand splints and a lot of tears (both sad and happy), Asianae’ has overcome so much!

With the knowledge from Connecticut Children’s and the energy and willpower that I continue to give as her mother, Asianae’ is able to walk today and continues to play among her peers in school with a smile!

Today ASD and Cerebral Palsy follow Asia, but as she continues to achieve her goals with guidance from Connecticut Children’s, she continues to show progress! WE WILL ALWAYS KEEP HOPE! We thank you Connecticut Children’s!

By the way, Asia’s exciting new plan is trying the Walk-Aide! I am so happy, and so is she! Asia knows that it will help her from not falling as much. To anyone out there who has a loved one that struggles in life with any type of diagnosis/illness, I give you hope to hold onto. Staying strong is not easy, however it is so worth it. We are all our kids have, so please keep fighting!

Living With Sickle Cell Disease

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Written by Brandon P., patient at Connecticut Children’s

My name is Brandon and I am a 19 year old young man who has been living with sickle cell disease my entire life. I was born with this disease on January 7, 1995. Currently, I am a sophomore at the University of Connecticut, where I am aspiring to graduate with a major in Finance to achieve my ultimate goal of becoming a Chief Financial Officer (CFO.) In addition, I work part-time at State Farm Insurance in Bloomfield CT. Lastly, I am very involved in my church. I am the choir director for the youth department, I teach Sunday School for teenagers and am the president of the youth ministry. Juggling all of my activities can be challenging at times; however, I don’t let my disease control or run my life.

My journey with sickle cell disease has been a long and painful one. To begin with, sickle cell disease is a hereditary blood disorder that causes severe pain and other medical problems. Patients with this disease have “sickled shaped cells” compared to circular cells like everyone else, which causes a blockage of blood flow and leads to the pain crisis. Not only do we have pain, but we are prone to infections and an increased risk of death. However thanks to medical advances, death due to sickle cell disease has significantly decreased.

My personal experience with this disease has had its ups and downs. Due to my disease, I’ve had numerous hospitalizations as a result of a crisis or infection, several doctor appointments and a handful of surgeries. My hospital stays, when I need to be admitted, normally last no longer than 10 days. My medical team says that I have a high tolerance for pain, so if I come in for pain, everyone knows it’s bad. There have been times where I can’t even move due to the unbearable pain I have to deal with. Not only is it a painful experience, it occasionally comes with other unforeseen medical consequences. Like I mentioned before, sickle cell patients are prone to infections. I have had numerous infections and three of them required surgery! Even though surgery can be a scary thing to look at, it helps that I felt safe and comfortable with all of my procedures and my medical team was there for me every step of the way.

Because of my medical team, everything seems to be a lot easier. I am treated regularly at the Center for Cancer and Blood Disorders at Connecticut Children’s Medical Center, and yes even though I am 19, I still get treated here. I know that I have the best medical care there is because there have been instances where I have been as far as Barbados on vacation, and they would do everything they can to get me back home.

To elaborate further, I was on vacation with my dad in Barbados, and I got sick there. We decided not to go to the hospitals down there because we felt uncomfortable getting treated there for my disease. We called Connecticut Children’s and we spoke with Dr. Boruchov who is my primary hematologist. She was extremely patient, understanding and thoughtful of the needs and concerns that my dad and I had. She didn’t just exemplify these qualities during this experience, she exemplifies this all the time throughout the years she’s been treating me. Not only is Dr. Boruchov wonderful, but my nurse Melissa has been there since I first arrived at Connecticut Children’s. Usually I am a hard stick, but 98% of the time, she gets the vein on the first try. There have been times when I needed to go to the ER, but I would go to the clinic for Melissa to start my IV. She has always been there, and whatever I needed she would always volunteer to help me in any way that she can. Even my social worker Nancy has been there for me and my family. She has helped us when we haven’t had the strength to fight. She is always giving me ideas to help better manage my care. Overall the entire Hem/Onc team has been a major part of my life, and they are like my second family.

Thanks to the staff at Connecticut Children’s, I’ve been successful in managing my sickle cell. The major thing that I have to do is drink plenty of fluids to keep myself hydrated. Hydration is key to help reduce the amount of times I have to go to the hospital. Not only is hydration important, I have to make sure I take all of my medication on a daily basis. These two things combined, I think, are the major parts in managing my sickle cell. Not only do I have to take my medicine and stay hydrated, I also have to dress warmly because significant weather or pressure changes can send me into a crisis. Lastly, I have to make sure that I get plenty of rest, eat healthy and exercise.

Even though living with sickle cell may be a set-back, I still consider it a blessing because I can only believe that living with this disorder will only make me stronger to achieve my goal of becoming a CFO of a Fortune 100 company.

 

September is sickle cell disease awareness month. The mission of the sickle cell provider and family advisory board is to improve the health care of children with sickle cell disease by adopting a philosophy of family-centered care at Connecticut Children’s Medical Center and assuring care is based on best practices. About 1 out of every 375 African American babies is born with sickle cell disease. Sickle cell disease affects about 70,000 people in the US and more than a million people worldwide. Sickle cell disease is genetic (passed through families). It is not contagious. Sickle cell disease affects the red blood cells. Sickle cell disease is a lif-long condition that can be life threatening. The course of this blood disorder, and its complications, vary from person to person.

Putting “the confirmation” in Perspective

enterovirus d68

by: Dr. Nicholas Bennett, Medical Director of Infectious Diseases and Immunology at Connecticut Children’s

Yes, Enterovirus D68 is officially in Connecticut. Here’s the thing though, we expected that confirmation because we’ve suspected it’s been here for a little over a week now. I’ve said it before and and I’ll say it here once again, DON’T PANIC. It’s important to remember Enterovirus is a very common virus, we see it all the time. This isn’t a new virus.

Enterovirus D68 is unusual in that, this year, it is causing high numbers of children to wheeze and need to come to the hospital. There are many more children though who are just experiencing very mild symptoms and are staying home or being treated in the emergency room and going home.

Because Enterovirus is a virus there is no treatment, except for treatments for the wheezing, the same as you would for any other asthma attack. It seems to be easily treated and kids are generally getting better quickly, in a few days.

We are working with the Centers for Disease Control (CDC) to track this virus, and expect more confirmed cases over the next week.

Although you may be worried about EV D68, please be mindful that we cannot possibly test every child for the virus. Our doctors and nurses are busy taking care of the children we have admitted. We have been testing a selection of children to help the CDC.

The most important thing is to help prevent the spread of this infection. Simple handwashing goes a long way- it’s all too easy to touch doors, stairwells, and elevator buttons and spread infections.

Finally, I’ll leave you with three important words… this will pass. My colleagues in the Mid-West are already reporting a substantial decrease in the number of admissions to the hospital. The same will be true for Connecticut. As with all other viruses, we will see it come and go.

What happens at a car seat check?

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Written by Meg McCabe, Safe Kids Coordinator at Connecticut Children’s

Did you know…this week is Child Passenger Safety week! Child Passenger Safety, otherwise known as car seat safety, is a safety initiative that promotes the safe transportation of children in vehicles? Connecticut Children’s Medical Center and the Connecticut Injury Prevention Center have several opportunities available for families to get their car seats checked throughout the year!

As a certified Child Passenger Safety Technician, I have seen even the most diligent parents install their car seat incorrectly without realizing it. Between locking the seat in place, making sure the harnesses are snug, making sure the seat fits your child or just keeping track of recalls- it seems like there are thousands of ways a car seat can be installed wrong. In fact, 4 out of every 5 car seats are installed incorrectly! But don’t fret- there are approximately 75 fitting stations located across Connecticut where you can get your seat checked and reinstalled properly.

Child Passenger Safety fitting stations can be found at your local fire or police department, which host regularly occurring car sear check events that are free to the public. Some fitting stations are open to the community while some may be private. Depending on the fitting station you go to, you may be required to schedule an appointment ahead of time.
If you do not have a car seat, some fitting stations like the one at Connecticut Children’s Primary Care Center, may provide new car seats to families who are in need. You can find a complete list of fitting stations in Connecticut at www.ctsafekids.org

When you attend a fitting station there will be certified Child Passenger Safety Technicians ready to check your car seat. All Child Passenger Safety Technicians in Connecticut have attended a 3-4 day Safe Kids certification class on car seats- these technicians know their stuff! I have yet to meet a Child Passenger Safety Technician who isn’t friendly, knowledgeable or excited to answer questions.

Before making the installation, child passenger safety techs will check your seat to see if it is expired or recalled. While they install the seat, they’ll explain to you exactly what they are doing and how they are doing it so as the parent or caregiver, you can make an install more easily yourself. They will even cover other topics such as airbags, projectiles, kids in hot cars and the importance of buckling up. The entire process should take only 30 minutes and by the end of the half hour you will leave with tons of new information, educational materials and a perfectly installed seat.

But most importantly…your child will be safer the next time they are traveling with you in the car.

If you’d like to get your car seat checked at Connecticut Children’s Primary Care Center, please call Luis Rivera at (860)-837-5319 to make an appointment during one of our monthly clinics. Call today to reserve your space for our clinic on October 24th!

To learn more about Child Passenger Safety and Injury Prevention, please register for the Safe Kids Connecticut Injury Prevention Conference on November 9th by clicking here.

What Parents Need to Know About Enterovirus-D68

enterovirusThe recent outbreak of Enterovirus-D68 is all anyone seems to be talking about these days. It’s scary stuff, mostly because it’s spreading so quickly and making a lot of kids very ill. Even though it has yet to hit Connecticut, doctors predict it will be here soon.

Our very own, Dr. Nicholas Bennett, Medical Director of Infectious Diseases and Immunology spoke with NBC Connecticut and WFSB earlier this week to share his medical expertise on this and shed some light on the recent outbreak. Video clips can be viewed by clicking the links below:

Let’s get to some of the questions that are probably running through your head right now…

What exactly is Enterovirus-D68 and just how worried should I be?
Here’s the good news; enteroviruses are actually quite common. In fact, most people who get infected with it don’t get sick at all or only experience mild symptoms. Technically, Enterovirus-D68 is a cousin of the common cold. There is a chance it could cause breathing problems in your child, most severely if they suffer from asthma.

The risk for serious complications is much greater for infants, children and teens, who have yet to build their immunity. Those with weaker immune symptoms are also more susceptible.

What do I need to look out for?
• Runny nose, sneezing, coughing
• Skin rash
• Mouth blisters
• Body and muscle aches
• Fever

Symptoms of Enterovirus-D68 typically last a week and children rarely experience any lasting health problems. That being said, care for the virus is usually supportive and similar to that of a common cold. Only a small percentage of patients will require hospitalization for their symptoms, especially if these patients suffer from severe respiratory issues.

How can I protect my child, and myself, from catching EV68?
The answer is pretty simple: wash your hands!! We cannot stress it enough! Practicing good hand hygiene and infection prevention techniques will protect both you and your child from contracting the virus and sharing it with others.

Do you have more questions?? Please let us know in the comments section of this post and we’ll get you the answers as quickly as possible! Afterall, knowledge is power.

COMING HOME: ALIANA

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by: Tina F., Aliana’s mom

Last Friday began as any other infusion day. We were running behind and Aliana had asked her best friend to join us. Becca is a great support for Aliana so after talking it over with her, we said yes. We stopped at Starbucks, her favorite place to go (she got $75 in gift cards from her birthday!!) before heading to Connecticut Children’s. They know us by name there, from the moment we walk through the front doors to admitting.

We’ve been to MS8 for the last few infusions, but this time we baked a basket full of fresh blueberry and strawberry muffins for the floor (we like to bring treats as our way of saying thanks.) Aliana got settled in as our nurse came in prepared to give her an IV. Sadly, it took 4 pokes (this is Aliana’s 18th infusion). Her veins are building up scar tissue, which makes it quite difficult. Needless to say, it was quite painful for Aliana and was awful to watch. But as always, her child life specialist, Kyle, was there for her. Over the past 1 ½ years they have built a pretty special bond.

That as a parent is what really matters to me, the relationships that have been built. The staff at Connecticut Children’s knows Aliana and how to help her. She just isn’t a face or skew number, she’s a person and they all know her likes and dislikes. After this, Aliana had an anxiety attack unlike anything I’ve ever seen. She was terrified and running around the floor saying she couldn’t breathe and that she was going to die. It was the first time we’d seen this.

The nurse called Dr. Bennett, who was there within minutes. He met her walking with the PCA, Stephanie, and asked if he could help. Aliana said she wanted to walk and so Dr. Bennett let the PCA continue to help her. As always, Dr. Bennett was wonderful. He hears her words and lets her work it through, which again, I value so much. Stephanie, who was truly amazing in helping Aliana that day, got her verbally back into a better place because yes, we were concerned about giving her medication to relieve the anxiety. Once she was in better place, her nurse, Krista, was able to run her IVIG.

Friday was an extra long day due to these events. As a parent, there is no worse feeling than not being able to make everything better for your child. Working where I work, I help kids on daily basis with issues like this, but when it came to Aliana, I was helpless. She was begging me to go home, pleading, and I had to say no. She did make it through and her favorite people all came back to check on her….Colleen, Kyle, Meg, Dr. Bennett… some even stayed to play a game.

These are the things that make Connecticut Children’s a great place. Even when you are heading home, they all make the effort to stop in and say goodbye. Going home always raises new worries in Aliana. She worries if she will have a reaction and if so, what will happen? Will she be ok? She’s been reassured time and time again with a soothing smile and calm gesture that yes, she will be ok 🙂

The staff on the floor is amazing. They know Aliana so well. If there is ever a time when we do have a new nurse, most times she’s been briefed to know that Aliana will ask her for her full educational background, how many years she’s been working at Connecticut Children’s and how many IV’s she’s done. Aliana feels safe there and that makes me more at ease. Although it can be quite difficult at times, I know they have it under control which makes it easier for me to take a step back and let these amazing people do what they do best!!!