Proud parents, Lori and Ernie Emerick were so excited when their third child, Arielle, came into this world at a whopping 2 lbs 15 ounces. She spent her first 31 days of her life in the hospital NICU, coming home at just 4 pounds 2 ounces. From that moment on, everyone knew she was a fighter. She was born with a high arched pallet and developmentally delayed in her motor skills. Doctors said did test and finally at the age of 3, Arielle was diagnosed with a speech disorder and was enrolled in the PPI program. After testing at the Van Riper Clinic in Kalamazoo, she was diagnosed with Apraxia. After Dad did research on Apraxia he found that children with Apraxia who learned sign language at a young age learned much better than those who did not. While attending 1st grade at Wenzel School, Arielle's father explained that children with Apraxia could improve their learning with the use of sign language. Arielle’s elementary teacher, Mrs. Yunker and educational assistant, Mrs. Hout, attended evening classes at the ISD with the family to learn sign language. They did this on their own time and out of love for their students. Over the next 3 years Arielle used sign language to help communicate her answers for school work and testing. During this time, she also worked almost daily with Mrs. Hoffelder to improve her speech. Arielle continued her speech therapy through middle school and by high school she worked through her Apraxia and was able to be understood by everyone. She was still delayed in some of her motor skills and physical development. Doctors again said she was small and nothing was wrong except that she was delayed.
Arielle did not like her learning disability to get in the way of accomplishing her goals. She would spend 3 hours on homework that would take another classmate 30 minutes to complete. Arielle enjoyed her weekly Girl Scout meetings and loved the friendships it built. Junior Achievement was a place where Arielle learned what working would be like. She enjoyed it so much that she worked at the Salvation Army Store the next summer.
When Arielle had two more years of high school left, her father's job moved the family to Hot Springs, Arkansas. Arielle had a good attitude and was excited to attend a new school the following fall. During the summer, the family would go on walks in the woods. One day while she was walking, Arielle became short of breath and her lips turned blue. The family doctor found Arielle’s thyroid levels were abnormal and started treatment. Arielle was also scheduled to see an Endocrinologist at the Arkansas Children’s Hospital (ACH) in the upcoming months. The doctor said tests need to be done because she thought Arielle had Turners Syndrome.
One week later around the first week of August 2010, Arielle came down with what appeared to be a cold or flu. By the time school started, she was not feeling any better, even after antibiotics. She attended her first day of school then missed the entire following week. The Doctor said she did not have a fever and needed to go to school even though she did not feel well. After she went back to school, she started feeling worse and had three weeks before her appointment to see the specialist at ACH. Two weeks of sleepless nights (her legs hurt) and vomiting when she coughed, went by. One morning after Arielle’s mom got up and went out to the kitchen she noticed a napkin with a drawing on it. Arielle had drawn a picture of herself with big tears dropping from her eyes and the words “I’m tired of this. It’s not fair”. Lori was immediately heartbroken and called Arielle’s doctor. Explaining that there must be more than the flu going on. On September 10th, 2010 the family doctor sent her for an echocardiogram. Three hours after the test was done, the doctor told Arielle's mother, Lori, to take Arielle straight to the ER at Arkansas Children’s Hospital. It was discovered that Arielle’s heart ejection fraction was a mere 10% capacity. An ejection fraction of 10 which means that only 10 percent of the total amount of blood in the left ventricle is pushed out with each heartbeat. This is not supplying her body with enough blood flow.
On September 10th 2010 Arielle was admitted to the Cardiovascular Intensive Care Unit (CVICU) and they told her parents she had Congestive Heart Failure. The doctors started treating her heart with an IV medication, Milrinone, to increase her heart's ability to pump blood. They had no answers to the cause and started running tests. Arielle's parents were told most likely a virus or due to her hypothyroidism. After genetic testing and karyotyping, Arielle was diagnosed with Turners Syndrome, which was probably why she became hypothyroid. The family doctor already started medication to get her thyroid under control and her levels were normal within a few days. The doctor said that with the thyroid under control her heart could get better.
The healing process
On September 11, 2010 Arielle was doing better and ate all 3 meals that day with NO VOMITING! Her vitals where good again. She spent time watching "Snow Dogs" on her TV. Mom prayed that she would sleep better tonight and her legs wouldn’t bother her.
On September 12, 2010 Arielle's day went better, she washed her hair and she got all prettied up! No problems with her legs during the day. She is sitting up in a chair with her favorite blanket, watching the movie "Annie". Tomorrow is going to be a long day, more tests and another ECHO. The ECHO should tell if the meds she's getting are helping. Arielle has been getting emails from people from all over. Today she read ALL her emails, and was in tears when she was done. She looked at mom and said "people love me, don't they? Then mom said" YES, they sure do! “
On September 14, 2010 the doctor came in today and said her Echo from yesterday showed her heart had gotten smaller (probably due to the fact they pulled 3 Liters of fluid off her body the first night she was in the hospital). There was no change in heart function, still a 10 but no decline. They are giving her Milrinone to help her heart function get better and hopefully reverse the heart damage.
On September 16, 2010 they moved Arielle to the step down unit. She is on two IV medications (Milrinone & Lasix). They started her last night on Enalapril (oral B/P medication) to decrease the work her heart has to do. The goal is to get her home on oral medications and give her heart time to heal and rest. A person can live with a heart working at 10%...as long as they are not overloaded with fluid (like she was last week). Doctor said lots of people live that way but she still has to be watched closely.
On September 17, 2010 Arielle had an AWESOME DAY! They stopped the Milrinone and IV Lasix...so she is not connected to any pumps now! She is only on oral medication now! YEAH!!! All she has on now is a telemetry (heart) and oximetry (oxygen sensor)...which makes it easier to walk to the bathroom and out in the hallway.
On September 19, 2010 Arielle had a rough night...she got some Ambien to help her sleep...but did little to help her legs. She kept trying to get up to go to the bathroom by herself but was a little unsteady. Her cough is back (but lungs clear) and she vomited during the night. Now she is afraid to eat again...because she doesn't want to get sick.
On September 20, 2010 her Echo shows no improvement. Arielle is staying in the hospital 2 more days so they can try new oral meds. The cardiologist being assigned to her after discharge is part of transplant team. They also feel now heart damage was due to virus since no improvement with echo. If the thyroid caused the damage the heart should have improved a little by now. They want us to prepare ourselves for her to have transplant at some point in her life.
On September 21, 2010 Lori stepped out of Arielle’s room for a few seconds to tell a hospital employee that Arielle was vomiting and needed help cleaning it up. When her mother came back into the room she found Arielle face down on the floor unconscious. A code was called and Arielle's mom (Lori) was escorted out of the room. Arielle was carried back to her bed and was conscious within a few minutes. Arielle's heart did not stop but her blood pressure was very low. Dr. said most likely from new medicine (Carvedilol). Arielle was immediately put back on IV meds again. The doctor said we may be here for quite a while.
On September 22, 2010 Arielle had been getting sick all day. The reason she is vomiting is because of decreased blood flow to her tummy, she can't digest food properly. When a heart is as weak as hers, more blood is pumped to the places it's needed the most (brain, kidneys) then other organs get what's left over. Mom and Dad had a meeting with the transplant team and signed paperwork for Arielle to be listed for a transplant. Arielle has her cardiac cath tomorrow with biopsy and abdominal ultrasound. She could be listed for transplant as soon as Friday. She's had a rough day today. Arielle hasn't been able to keep anything in her tummy.
On September 23, 2010 Arielle had the pre transplant heart cath done today. Arielle did not do well with even a small amount of anesthesia. She will be listed as 1A on UNOS list for transplant. The doctors told Arielle's parents to be ready for a wait that could last months.
On September 24, 2010 Arielle had rough night. A problem w/blood gases, cough, fluid, and vomiting. The doctors are evaluating today for the Berlin Heart Pump until she has transplant. She now has more IV's going. Mom posted this on Facebook that night. "My heart cries out to God and asking why this is happening to our precious Arielle!!! She doesn't deserve to go through this and I don't' understand why!!!! Every time I think of what she is going through and the rough road ahead of her...I WANT TO SCREAM!!! I wish it were me sitting in that bed instead of her."
On September 25, 2010 Lori's mom is spending the night with Arielle. So Mom and Dad could take Hannah out to dinner and spend time with her. It's been two weeks since Arielle was placed in the hospital. Mom feels bad leaving Arielle, but Arielle was excited to hang out with "Mema". As mom leaves she prays "Dear God, please let Arielle have some rest tonight...PLEASE...she is so tired."
On September 26, 2010 Arielle has been tired today. Her blood pressure is a little low. She has not been talking much either. I am praying she sleeps well tonight.
On September 27, 2010 Arielle was happy 2 see Ernie's parents. She had some problems with low blood pressure. Mom painted her nails pink for her today.
On September 28, 2010 Arielle ate breakfast, lunch, and dinner and kept EVERYTHING down!! Praise The Lord! Doctors are still trying to wean that Epinephrine. Her blood pressure has been stable today. Arielle sat up in chair and made bracelets with TINY beads. This girl amazes me! We are celebrating Ernie's birthday here at hospital with birthday cake thanks to his mom!
October 3, 2010 Arielle has had a few wonderful days this week! She got to see ALL her grandparents and spend time with them. Her Epinephrine is almost weaned off. Oxygen is at 2 liters now instead of the 10 she was on. TPN is gone completely. She is eating well and keeping it all down.
5, 2010 Arielle's father talked her mother into going home for a night of sleep
while Arielle’s grandmother stayed the night at the hospital with Arielle. Lori
finally gave in and left the hospital for the night. Lori and Ernie were so
tired that they fell asleep shortly after they got home. Around 11pm, the phone
rang. Ernie remembers the call like it was yesterday.
about 5 Seconds of silence while Ernie was running what was just said thru his
mind. “By all means proceed with the transplant!” said Ernie.
Arielle smiled and started crying.
The family then all held hands and said a prayer asking for protection during the procedure.
Arielle's parents walked next to her as she was being wheeled in her bed to surgery. At the double doors, they kissed Arielle and told her they would see her when she wakes up. Arielle looked at Lori and said “I got my miracle” as she went through the doors.
Lori and Ernie were told her surgery would last 5 to 12 hours so they should settle down in the waiting room for a long wait. Arielle’s surgery was done in 3 hours and 10 minutes. They told them that everything went perfect and the new heart started on its own, without any help from the doctors, before she was taken off bypass. Arielle's old heart was so enlarged that it made the placement of the new heart much easier as there was enough room in her chest cavity to allow for swelling, which is common after a heart transplant. This allowed the doctors to sew up Arielle's chest cavity which they presumed would speed up her recovery time.
Arielle found out her heart was sick and got a transplant 26 days later. Arielle' recovered from her surgery in 12 days and was released from the Hospital. Arielle was released to home isolation for 6 months to prevent her from getting sick while her immune system is at its lowest due to her anti-rejection medications.
There where strict rules that needed to be followed while Arielle came home after her transplant. She was to be on isolation for a planned 6 months. This started with no one being allowed to come over to the house except the family members living in the house. Arielle was not allowed to leave the house except for check up appointments. Shortly after getting home Arielle has been allowed to continue her schooling at home. Two teachers came to teach Arielle at home during the evening. Arielle had home work to do every day and spent the first 2 to 4 hours completing it. The teachers brought everything needed to teach Arielle to the house. To help Arielle complete her science and math projects they also brought lab equipment. Arielle loved being able to do her work and looked forward to the time her teachers would come.
Arielle was told she could go on walks outside and that she could be around people outside, but she had to wear a mask. Arielle’s first outside experience was at her new church. It was a night of trunk or treat in the church parking lot. She got to give out candy and even do the cake walk. She got to visit with other people.
One of the battles that Arielle faced was rejection. Arielle went into rejection a couple times during the year. The doctors would adjust her medication to treat the rejection and bring it under control. The biggest battle was due to cytomegalovirus (CMV) in January 2011. Most people have been exposed to this virus at one time or another in their life. Exposure to CMV allows your body to build up antibodies known as a "titer" to CMV. It is thought that patients with titers may be at a lower risk of developing CMV infections during post-transplant but this is not always true. Arielle did not have a high titer to CMV. This is was due to no exposure to CMV before her transplant. Her heart carried the virus but her body didn't carry the antibodies to fight off the virus. This is one of the downfalls of a heart transplant, but there aren't any other options when she was so sick with heart failure. During the primary fight with the CMV, Arielle was admitted to the hospital for treatment. After around 14 days of treatment for CMV in the hospital, Arielle was sent home. The family could then continue the IV treatments of Gangcylovir for her. After 5 more weeks of treating Arielle for the virus is was brought under control. Arielle’s transplanted heart was going in the correct direction. Arielle was still to be on Isolation for the rest of the 2010 and 2011 school year
During Arielle’s Isolation she had time to look up things that would help her live with her new heart. Her first thought was eating healthy. She started looking up heart healthy eating on the internet. During her search she found a wonderful resource thru the Hungry Girl web site. Arielle soon found out that Hungry Girl also had a cooking show on television and got all of her cook books. Arielle read these books and used the web site she helped her mom change the eating habits for the whole family. Arielle then told us about a book signing that Hungry Girl was having in Memphis Tennessee. Arielle was given permission to go to the book signing but she had to wear a mask to protect herself. At the book signing Hungry Girl talked for a few minutes at the beginning and had people ask questions. She then started signing her book. The line was long and we knew it would take a couple hours to get to her so we were going to sit and wait. Then Arielle and her Sister Hannah noticed that two girls walked in the store right after Hungry Girl started her talk. Arielle thought they looked like girls from the cast of the new Nickelodeon show Victorious. After Arielle and Hannah got the courage to go ask the girls if they were from the show, they found out they indeed were. Then for almost 2 hours all four of them talked. Arielle got to share her story about her new heart and Hannah got to ask them questions about their life and career. Most of all Arielle got to tell them about Turners Syndrome. After most of the people got their books signed, Arielle finally got to meet Hungry Girl. Hungry Girl told Arielle she knew about her story because Arielle’s mom Lori had emailed her. She signed Arielle’s books and they took some great pictures. This was a trip that both Arielle and her sister Hannah will always remember!!
It was the end of the school year before we knew it. Arielle was still doing her school work at home. Arielle was asked if she could come to school at the end of the year and receive an award given out by the school. Arielle received the eleventh grade HEART OF THE LION AWARD. This went to a student who strived to do well in school during times of hardship and trials. The Lion is the mascot of her school, the Jessieville Lions.
During the summer Arielle was allowed to go to church with a mask on. She even got special permission to travel by car to Michigan to visit family and friends over the Fourth of July. She spent most of the time with her cousins Paige and Courtney and even spent the day with her best friend, Khala. It was a great time for her and her family!
The new school year was about to begin and the doctors released Arielle from isolation. She now gets to go to school for her senior year and can do things like watch a movie in a theater or eat in a restaurant. One of the hardest parts of this journey was over for her.
Arielle enjoyed school the way most kids enjoyed an amusement parks. Part of Arielle’s school day was to go to Abilities Unlimited (a great workplace for those with disabilities). Arielle enjoyed working there so much. One day when she was working Arielle’s mom and dad went for a tour of the place. Arielle’s supervisor showed them around and they were amazed at how the workers were enjoying doing the tasks they were assigned. Then they were directed to where Arielle was. Arielle was inspecting parts (her supervisor explained that due to Arielle’s attention to detail she was great at inspecting parts). Her parents watched for a moment as she sorted the bad parts from the good ones. When Arielle notice her parents she jumped up with a big smile and then showed them around. Arielle was proud of the people she worked with and what they did there. She told her parents she liked it there very much.
Arielle also got to make new friends in school. She was able to go on school outings with her classmates and birthday parties. Arielle even started bowling practice for the Special Olympics. The family went to home football games where she would enjoy saying hi and talking to the different people she knew. She was so proud of where her life was going! Yep it’s going to be a great senior year she said.
One Year Check
At Arielle’s one year check up a test is done by shooting dye into the heart arteries and the veins around her heart. When this test was performed it did not go well. It showed her larger arteries were clear but the smaller vessels and capillaries where not taking the blood from her arteries to her heart (Coronary Artery Disease). This would eventually cause damage to her heart. She would need another transplant again. But the doctor was not sure if Arielle’s body would accept another heart. She shared her concern on how fast Arielle rejected her first heart. This could have been caused by many different things, high cholesterol levels from anti-rejection drugs or the CMV she had right after the transplant. The doctor said she never had a Turners Syndrome patient with a heart transplant before and that could be a problem. The doctor then said she would have to consult with other doctors from other children hospitals to see if any had seen this in the past. The doctor told us Arielle could suffer a heart attack at any time and not feel it since the nerves were cut when they did the transplant. They did not know how long it would take for the disease to progress and started monitoring her weekly. The Doctor talked to mom and dad without Arielle explaining that if another transplant was not done she would eventually put on life support until her parents made the decision that no parent would want to make.
The week that felt like eternity
During the next week the doctor got the information from the other hospitals. Mom and Dad prayed that Arielle would get that second transplant and they would not have to be in the position to take her off life support. During Arielle's appointment the doctor explained that her and the other doctors that she consulted with all thought that Arielle would benefit with another transplant but with different rejection medication. The doctor glanced at mom and dad asking what they thought about it. They replied please do the second transplant. The doctor then looked at Arielle and asked her what she thought. Arielle said "I'll do it for mom and dad." They then put her on the transplant list as a 2 status, on October 21, 2011. Arielle continued life as she knew it. She went to work and to School with everyone’s knowledge of her condition.
The wait begins again
Again we started seeing signs of Arielle getting sick like the year before. We knew what to expect this time and she was being watched closely by her doctors. Arielle was very upset “why do I have to go through isolation again!” She was not worried about the surgery or getting a 2nd heart. She didn’t want to go without seeing her friends at school or work. So Arielle’s teachers and mom made every effort to let her do every class outing and to get involved until she could not longer do it physically. Arielle got too sick to remain at home and was admitted into the hospital on October 27, 2011. She was started on IV heart medication and was listed as 1A status on the transplant list. After 1 week we were informed that since Arielle turned 18 in July she would be listed as an adult. Therefore her status will go down to a 1B while she was in the hospital.
Dad gives mom a break
Then one day mom went home to be with Arielle’s sister and let dad stay with Arielle for the night. Arielle soon had to use the restroom so her nurse helped her while her dad waited outside the door until they were done. As dad waited outside the door he heard the nurse yell “DAD WE NEED YOU”. He walked in and Arielle was not breathing and had turned blue. The nurse told him to hold her and to make sure she did not fall and hit her head. The nurse pushed the code button. In 20 seconds there were 3 doctors and 10 people in her room. Her dad had already picked her up and placed her in bed. Dad stepped back with tears flowing down his face to allow them to work on her. Dad was immediately escorted out of the room. Outside the room Dad was praying "Oh God please don’t take my baby girl. Get her through this Lord." In about 5 minutes they told dad they needed him to come back into the room. When he went in Arielle was awake and was asking for him. When he got there she asked him what happened. He said you passed out and they wanted to help you. Without knowing what truly happened she looked around and said “all these people for me”. Dad smiled and said yes you are very important to every one of them.
Arielle was put into the Cardiac intensive care unit. Arielle’s mom stayed at the hospital with Arielle most of the time with Grandma giving her a break for a night or two. Arielle was in the hospital for about 4 weeks now and her medications were increased so she could be stable. But Arielle was going into a depression now. She missed her classmates, the friends she made at work and church. She learned how to Skype with people using her iPod touch. Her school class and her church youth group would Skype with her. She was smiling every time she talked to them. But afterwards she would miss them even more. She had many people sending her cards and emails. She loved reading them. Being 18 puts her on a much larger transplant list. This wait could be much longer than the first. This put Arielle in a deeper depression. Arielle’s physical health was getting worse. Her parents talk to the doctors about her options if her heart gives out before she gets a donor heart. She can be put on the Berlin heart pump if needed. This will pump the blood throughout her body so vital organs can receive the oxygen they need. They needed to ask the government for permission to use this new technology. It had been used overseas but not approved here in the United States. Arielle's parents continue to pray that Arielle would be healed and she would have the strength to continue on. After being in the hospital 54 Days it was decided, after tests showed kidney function was not as good as it needed to be, the Berlin Heart pump would be needed to keep her alive and other organs in good condition.
The Berlin Heart
The surgery was done on December 20, 2011 and took about 11 hours. The first 48 hours are the most critical with high risk of bleeding and stroke. Because of the risk of bleeding, the surgeon decided to leave the chest cavity open (with a sterile occlusive dressing over it) to watch for bleeding. If there were to be heavy bleeding, it would be easier (less stress for Arielle) to go in and fix it. The staff kept her heavily sedated to keep her still and comfortable. The Berlin pump was a device that was hooked to a lap top PC. The PC controlled the 2 pumps on the device that would pump the blood thru her body just like here heart did.
On December 22, 2011 Arielle started responding to her mother’s voice. She opened her eyes when her mom told her she was there. It's good she is responding but every time she hears voices her Central Venous Pressure goes up and they want that to stay low. She is taking extra breaths over the ventilator and coughing when told to.
On December 23, 2011, the surgical team closed up Arielle's chest. After this surgery she started bleeding. She received 5 units of blood due to bleeding. They need her to stay still and not move or take any breaths on her own because some of the bleeding is coming from her lungs. They are giving her a paralytic to keep her sedated so she will have time to heal.
On December 25, 2011 Arielle is still having pulmonary hemorrhaging. She had to receive more platelets and another unit of blood. She currently has 18 I.V. pumps going. No wonder she needs two nurses on duty! They are still giving her a paralytic to keep her sedated so she will have time to heal.
On December 27, 2011 it has been 4 long days of praying since they closed her chest. Christmas was a blur. Today has been a little better for Arielle. Chest X-ray looked remarkably improved and her kidney levels are better. Her Parents sat in her room today off and on. Whenever she hears there voice her blood pressure increases. They don't want it high because of the chance of stroke increases to much. Doctors are trying to take away some medications like the dopamine. Bleeding in her chest tubes is down. As far as blood in the lungs, the doctor said the body will take care of that itself when she can cough and they can suction it.
On December 29, 2011 Arielle started to wake up! They stopped the paralytic that night. Her blood pressure is doing better now. She's moving her legs and reached down to feel the Berlin pumps. Her parents asked if she knew what they were, she shook her head yes! She still had the breathing tube in and could not talk. So she is trying to use sign language. She wanted her iPod music so we started playing her favorite Christian music! God is so GOOD!! So are the doctors and nurses!!! Mom and Dad are so thankful that everyone is continuing to pray for her. After the bleeding last Friday and the pulmonary hemorrhage on Christmas night, it's a miracle she is alive and doing so well!!!!
On December 31, 2011 they took the breathing tube out! She doing great!!! Dr. said after everything that happened last weekend, it's a miracle she is still with us. Mom told him about the thousand + prayers going up for her...he agreed...GOD IS GOOD!!! They are weaning her off the Versed and Morphine and are going to give her Methadone to help with that. Arielle was surprised today is December 31st! She then realized that 10 days had pasted and it was New Year’s Eve. Her eyes got big and she said "I missed Christmas" Mom and Dad told her not to worry and pointed to the beautiful pink Christmas tree and the gifts under it. This is the Christmas tree that the ladies of the church got together and made for Arielle. It was a pink 3 foot tree that had a lot of pink glitzy decorations. Arielle was so found of that tree.
The tubes are a constant
reminder that every day is battle to survive. Every minute is borrowed time.
The Berlin Heart is just a temporary bridge to her future heart transplant. The
wait for a new heart is excruciating and stressful, but with God by the
family’s side, they continue to be patient for a perfect match. Ernie and Lori thanked the Lord everyday for
the doctors, surgeons, nurses at Arkansas Children’s Hospital and the inventor
of the Berlin Heart Pump!
On January 03, 2012, Dr. Frazer announced that they had found a match for Arielle. The feelings of emotion overwhelmed Mom and Dad, but at the same time they knew that somewhere a family was grieving. For their family member had passed and gave our daughter a new heart. This was the best gift anyone could ever give to another. The family gathered around Arielle and a prayer was said for the donor family and asking God to protect Arielle during the surgery.
They took Arielle to surgery around 7pm. The Surgery nurse kept mom and dad updated on what was going. They had to time to do everything perfectly. They wanted to have her old heart out by the time the new heart arrived. Around 11pm the family was informed that the heart was here. At 11:36pm they were starting to sew in her new heart and at 5:30 am the next morning, she was off the by-pass machine. They kept her chest open to check for bleeding. Arielle did very well after the surgery and did not have any of the same complications she had with the heart pump. They did require an external pacemaker with wires going to the new heart to keep the proper rhythm. The family is thankful for the prayers from friends and family members.
Healing from the Second Heart Transplant
On January 5, 2012 Arielle’s blood pressure is all over and her new heart still needs the pace maker. They said that at times it can take 2 to 3 days for the heart to beat on its own and the pace maker can be removed. That night they were able to close her chest. Mom and Dad prayed everything would go fine this time. They could not go thru another experience like the last time.
On January 7, 2012 Arielle was breathing on her own. Her blood pressure is under control now. Her mom and dad are thankful for the continued prayers from everyone.
On January 8, 2012 they pulled Arielle’s chest tubes (all 5 of them). They are also coming down on her sedation and morphine. With the sedation medication lowered chest tubes came out this morning (all 5 of them). It didn't seem to hurt her. They are coming down on sedation and morphine to wake her up more so they can hopefully taking breathing tube out this afternoon. Everything is going good for her. She told me last week the first thing she wants to eat is a cupcake! Lol chest tubes came out this morning (all 5 of them). It didn't seem to hurt her. They are coming down on sedation and morphine to wake her up more so they can hopefully taking breathing tube out this afternoon. Everything is going good for her. She told me last week the first thing she wants to eat is a cupcake! Lolthey were able to remove the breathing tube and the pace maker. The first thing she told mom was that she wanted a cupcake.
On January 9, 2012 they tried Arielle on clear liquids today. She did well with a Popsicle but coughed every time she drank through a straw. They will try again tomorrow to see if she does better. If not, she may need a swallow study done. They are weaning more of her sedation meds but she still is very sleepy. Her heart is doing well without the pacemaker now.
On January 10, 2012 they are getting her out of bed and starting physical therapy. She has lost 23 pounds since last October and her muscles are week from the being in bed for over 2 months.
On January 11, 2012 Arielle had a head CT. Her smile and tongue seemed crooked and right side a little weaker than the left. They needed to make sure she didn't have a stroke or a bleed (because she had the Berlins a couple weeks ago). CT was normal! She is really weak though. PT and OT worked to sit her in the chair and she didn't have much strength to stand, probably due to being in bed so long. She will get the muscle tone back, just will take some time. She was more awake today but still a little out of it. Her heart is working great.
On January 13, 2012 Arielle had a swallow study done, and she is definitely having problems with liquids and some foods. She isn’t allowed any liquids and only ground foods. They are giving her formula through a tube in her nose. She is having a hard time adjusting to this. I know its temporary, but she really wants a cupcake! Her body is so week she can barely stand. PT and OT are still working with her. She still seams disoriented at times.
January 17, 2012 Arielle had a good day today! She still can’t stand on her own but she is getting stronger every day. She also got moved out of ICU to the step down unit. So now mom gets to sleep in the same room as Arielle. Slumber party time!!!!
January 23, 2012 Arielle had another swallow study done today. She can’t have regular fluids but can have honey thick liquids. She had apple juice and Arnold Palmer half and half. She walked a few steps with her walker but she is still scared she will fall.
On January 25, 2012 Arielle walked 15ft this morning with the walker. Medically she is doing great! She is eating better. They give her tube feelings through the night for extra calories. Arielle is already talking to mom about the things she missed last year at school. Her junior prom was missed last year and she did not want to miss her senior prom that was scheduled for March 30th.
On January 27, 2015 a good friend of Arielle’s came for a visit and brought here a healthy cup cake.
On January 31, 2015 Arielle had a heart cath done today. The pressure on the left side of the heart is a little higher than they want. But sometimes it take a little longer for a new heart to relax. Arielle’s Biopsy’s results are a 1R!!! This is great news! They will reduce her Prednisone and she is one step closer to coming home.
Rehab at home
On February 6, 2012 Arielle arrived home at 6PM. She is still very week and will now have physical therapy at home. When she goes to the doctors she will have to use the wheel chair for a while.
On February 7, 2012 Arielle’s classmates surprised here today with signs welcoming her home. The front yards was full of kids and signs. She can’t get close to any of them yet because of her immune system is so low. She smiled and cried at the same time.
On February 10, 2012 Arielle had her first clinic follow-up appointment. Her heart looked great. They did some more test and will call if anything is abnormal. On their way home mom received a call to come back to the hospital because a chest x-ray came back abnormal. They saw some air around her intestine (belly) area. A cat scan confirmed the x-ray results. The doctors are not sure where the air came from. It could be a perforation (hole in the intestine) or from bacteria growing on the intestine wall releasing gases into the abdomen. Arielle is not in pain and has no fever. They have admitted her to the hospital again and started IV meds again. Gastroenterologist specialist said she has never seen someone with a CT scan like hers and the patient not being in pain and being very sick. She can’t eat or drink for 10 days to give her GI time to rest. Arielle is very upset. This was some of the worst days for Arielle. She was fed by IV’s and could not eat or drink anything. Her mouth was so dry. Mom would moisten her lips with water on a swab. It took all of Arielle’s power to not such the water off the swab and swallow it.
February 21, 2012 Arielle had her repeat x-rays of her abdomen yesterday. They said the air bubbles were still there but MUCH improved from 10 days ago. They started her on clear liquids for now but she still needs to use the thickener (Thick It instead of Simply Thick) and she doesn't like it. Her echo looked good and so does her blood work.
February 23, 2012 Arielle’s x-ray was good today. The air is gone! They let her have some bland foods and she tolerated them very well. Her spirits are so much better now.
March 2, 2012 Arielle’s heart cath went well yesterday her pressures are good. She came home today. Her incisions for the 4 drain tubes are not healing. So we have to pack them with special strips every day. This is painful for Arielle but she is letting us do it. OT and PT will be scheduled to start this week at home.
Is Prom a go?
On March 3, 2010 Arielle put on a face mask and went looking for a prom dress. The store we went to had over 100 dresses. It was not busy for a Saturday. Hannah was a great little sister and helped Arielle put on and take off all the different dresses. After 2 hours she found that perfect dress. The dress will need some fitting changes but it looks great on her. Now she will work at getting rid of that walker.
March 7, 2010 Arielle had a clinic day today her heart looks great and they went down on the prednisone again. Arielle’s incisions are healing but we are still packing her incisions with the special dressings. They have cleared her to go to Prom. God is good he made is possible for her to get this done and make it to prom this year. She is still using her walker. But working every day to strengthen her leg so she will not have to go to prom with the walker. A local seamstress arranged for Arielle to come in during closed hours to do a fitting. She was not released yet to go out in public due to her rejection meds.
March 14, 2012 Arielle had another great checkup! Her echo looks great. Her incisions are healing great but we will still pack them. It’s a slow healing process this time. After the clinic trip we went to Charming Charlie’s to get her some bling for prom.
March 17th, 2012 we took Arielle and the family to the Saint Patrick’s Day parade in Hot Springs. Arielle sat in a wheel chair and had so much fun.
The problem was Arielle still needed her walker to get around and did not want to go to Prom with a walker. Mom then got Arielle a pink glitter cane to use instead of the walker. Arielle Spend 3 days working on walking with the cane.
March 30, 2012 tonight is a big night. Arielle is going to prom. She worked so hard and will not be going with a walker but a pink cane with a lot of bling on it. She went and got her hair and nails done. She looked so beautiful. She started the day out meeting at her date at a friend’s house. Pictures were taken and they then went to the Outback Steak house for dinner. During prom the kids vote for prom king and queen at the dance. Mom and Dad got a call at 9:30 and was told Arielle was alright and that they should be at the prom when they announced prom king and queen at 10 pm. At 10 pm it was announced that Arielle was voted by her classmates as prom queen. Arielle was shocked and happy at the same time. Arielle went to her senior prom and was voted prom queen. God is good, so good.
Is Graduation a go?
During the last 2 years Arielle had school at home and at the Hospital. She worked hard to keep up. Her school teachers would bring things in for science projects. We all enjoyed listen to her during her school time. It was amazing that she still did her school work even when she was not feeling well. Arielle would tell us that she need to do her school work because she was going to graduate this year. She got the good news that she would graduate with her class. They explained that there would be about 5 steps to climb to get up on stage and off stage. Arielle still had problems climbing stairs. They said that boys from her class had volunteered to help Arielle climb the steps. Arielle said no I will do it by myself. She then started working on step climbing. On May 15th 2012 she climbed up and down the steps to receive her diploma. The smile on her face said it all. She got to graduate with her class!!!! God is Good!!!!
Make a Wish
After Arielle's first transplant she was granted a wish from the make a wish foundation. When they interviewed Arielle they talk to her with her family then one on one. They told mom and dad that she was going to receive a wish but her health had declined after the first transplant that she could not do her wish. After the second transplant it was decided that she could go on her make a wish trip. A graduation party was planned for Arielle at the church. During her party the youth group made a Disney cruise ship out of cardboard and surprised her by telling her she was going to go on a Disney Cruise. We told her we were leaving next week! Arielle was so excited.
On June 9th Arielle and her family left for her make a wish Disney cruise. Arielle and her family had a great time on the cruise ship. Arielle would find something special from Disney left in here room every night. From the Disney Shows to the great meals and entertainment every minute was great. Arielle got to do a few things off the boats on different Islands. She got to get in the water and visit the seal that played Andre in the Andre movie. She fed and went swimming with sting rays. She got a personal meet and greet wish many of the Disney characters. Arielle and the family was treated like royalty.
Looking at the future
After the Disney Cruise Arielle talked to Mom and Dad about College and the future. She talk to them about a school in Hot Springs that would train her how to work in a restaurant. She made it known that she wanted to open her own cupcake store someday. She said Mom could help her and she would love being her Mom's boss. She went to the school and visited on July 25, 2012. Arielle then went back on August 10, 2012 to take some entrance exams for the school. She was going to become a cook/baker!
That Sunday Morning August 12,2012
Arielle and Mom where up first. They ate breakfast together and then went to get dressed. Dad was dressed first and wanted to make sure Arielle was on track to getting around. Dad knocked on the door and said "Arielle you have 10 minutes OK” dad did not get an Answer….. "Arielle did you hear me?"….. Still no answer. "Arielle I'm coming in"….
Dad could not open the door at first because something was blocking the door. Dad pushed so hard on the door that he broke it at the hinges. The door was being blocked by Arielle laying on the floor. "Arielle are you OK"….. Then dad noticed that she was blue, had no pulse and was not breathing. Dad yelled at mom and told her to call 911. Dad then started CPR. Mom was on the phone with the 911 talking to them while dad was working hard to get his little girl to respond to the CPR he was giving. In about 7 minutes the paramedics arrived and took over the CPR that dad was doing. Dad stepped back and watch them work on his little girl. They hooked up the defibrillator with the leads. Dad noticed they continued CPR and did not defibrillate her. He then asked "why are you not defibrillating her…. The paramedic said she has no rhythm at all so defibrillating will not work. He started opening up his medical case and then a Police officer showed up with other firemen. The police officer got dad and mom out of Arielle’s room so the emergency personnel could work on her. Dad and Mom started praying again for God to heal her and to not take her from them. The officer then came back into the living room with mom and dad and explained that they have giving her medicine and an IV they still have not got her to respond. He said to expect that she might not make it. The ambulance arrived, they placed Arielle in the ambulance and left for the hospital. A friend from the church gave mom and dad a ride to the hospital. When Mom and dad arrived at the hospital Arielle's sister and older brother where already there.
A nurse brought the family into a small room where a doctor met them. He explained that they could not save Arielle. Then the family got to spend some time with Arielle.
A short time after Arielle went to heaven a note pad was found in her purse and on one of the pages in Arielle's hand writing it said "I am a child of God." A hand held video recorder that she kept in her purse was also found and in it there was a video of Arielle says "I know you may not be strong enough...But God is."
Arielle's parents know that they will be reunited with her again in heaven.
Please visit Arielle's FACEBOOK FAN PAGE.
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