August 9th, 2015 – Anna Plake

Here’s Anna’s Riley story:

When asked to write a biography for a 12 year old, it is amazing to think a 12 year old has had enough happen to her to need a biography. However, when living with a chronic illness most of your life, a lot does happen. When Anna was 20 months old, she started walking a little differently than normal. At first, I, her mom, thought I was imaging it all and just being an anxious parent. Over the next several weeks, however, I realized something was dramatically wrong and unfortunately, it wasn’t my imagination.

At first, Anna’s only symptom was walking a little “wobbly,” but over the next few weeks she began to limp, especially after waking in the morning or from a nap. She never really complained, but Anna rarely complained about anything. She was a cooperative baby, always smiling and curious about the world. When she started to not be able to bear weight and refused to walk in the morning, it was then obvious something was wrong. At this point, she was crying and wanting to be held all the time…not at all like our Anna. Then, after about hour, she would start walking with a limp, and be back to herself. At this point, we went to her pediatrician.

At her first visit, Anna, of course, was her resilient self, not really showing any symptoms at all. Her knee was a little swollen upon examination, but she was crawling and running. When I discussed her symptoms with the pediatrician, juvenile arthritis was mentioned as a possible explanation. As a parent, this was devastating, as I immediately imagined the worst. Since her symptoms had only begun, we had to wait for the results of her labs as well as watch her symptoms. When we received the test results, everything looked normal, which was encouraging, but it was obvious that her symptoms were not resolving. Instead, Anna got worse. Since her lab results were normal, her pediatrician thought Anna’s symptoms were as a result of an injury and would resolve. As a parent, I knew that I had to be Anna’s voice and advocate. I made another appointment and several days later, her laboratory results confirmed that she had an autoimmune disease—juvenile arthritis.

Living in Iowa at the time, Anna was referred to Dr. Polly Ferguson at the University of Iowa, a two hour drive from our home. At her first appointment, we realized that Anna’s disease was worse than we knew. She had disease involvement in both of her knees and ankles instead of just one knee. She already was experiencing limited range of motion in both of her knees. As a result, she had to wear splints on both legs at night. In addition, she began to take daily medications, which she didn’t like because of the taste. However, Anna didn’t let this deter her. If you could see her at that time, you would never suspect anything was wrong. She didn’t let anything stop her…she acted as any toddler would. She climbed, ran, and jumped. She even figured out how to walk while wearing her splints.

Initially, Anna tried several medications to control the arthritis. Unfortunately, long term use of these medications required regular blood draws to get her laboratory values. This, I believe, was the most difficult part for Anna. She could deal with the daily pain from the arthritis because she was use to it. Blood draws were frightening to her. After the second time she had her blood drawn, she knew what was going to happen. She would try to hide under a chair in the waiting room thinking that I would not be able to find her and she could avoid having her blood drawn. Over the years, her anxiety of going to the lab has decreased, in part, because of the anesthetic cream we use, and also her knowledge of her disease has increased. In the beginning, it was difficult for a two year old to understand. Now, ask Anna, and she can tell you anything you want to know about arthritis.

When we moved to Indiana, we were worried about Anna’s care. With the change of jobs came the change in insurance. Would they cover Anna? We had to make arrangements in our coverage to make sure there were no gaps in health insurance so that she was covered. In addition, we had to change doctors. Luckily, we had Riley Hospital in Indiana. We found Dr. Bowyer through our physician at the University of Iowa. Once we met Dr. Bowyer, I knew we were good hands. Anna loves Dr. Bowyer and her staff, and considers going to the doctor a treat. Although Anna eventually developed arthritis in her wrists and finger, she is now doing quite well. In the last couple years, she started swimming on a club team, which has made a huge difference in her physical functioning and confidence. Anna is now 10 years old. Thanks to her doctors, nurses, physical therapists, and medications, most people would never guess that she has arthritis.

Over the years, Anna has faced many challenges. She has had side effects from her medications, including nose bleeds and elevated labs. She has to explain to peers and adults that yes, kids do get arthritis too and she is not making it up. She has had difficulties in dressing herself (buttons are particularly hard), opening doors, and pushing the button on the water fountain. It sometimes takes her a little longer to physically accomplish things. However, she also has had many blessings, including her physicians and their staff, teachers at Battle Ground Elementary, and many friends. The biggest blessing is Anna herself. Anna loves life and approaches each day with joy. She has not let arthritis stop her from doing what she wants. Instead, it has become a part of her because she does not remember a time when she did not have this disease.

Recent update… Anna isn’t swimming too much anymore, but she’s gotten into theater and doing character speeches. Anna favorite candies are Kit Kats and Sour Patch Kids. She is still doing quite well with her disease and seems to be a confident,

July 26th, 2015 – Oliver Gilkinson

Oliver is the Gilkison’s miracle baby.  He was born February 3, 2009. He has surpassed all odds and expectations set before him. Though there were no signs of problems during the pregnancy, Oliver was not breathing upon birth. He was revived, but still suffered from breathing difficulty during his first few weeks of life. While napping, Oliver would stop breathing and turn blue. As the episodes began happening more frequently, Oliver’s pediatrician recommended that he see a pulmonologist at Riley Hospital for Children.

Upon arriving at the pulmonologists door with our stories of “blue” spells and having a few spells in the office the Dr. sent us off for a sleep study. The sleep study was supposed to last a full 3 hours. After 2 hours they stopped the study and admitted us directly into the PICU. Over the next few days we endured a whirlwind of doctors and theories, but the common thread was that Oliver had obstructive apnea. They did a bronchoscope and determined that he had laryngomalacia, and a few days later he had supraglottoplasty. Oliver showed improvement in many ways.  However, a week after the supraglottoplasty surgery he had a follow up sleep study, and to our surprise he still had numerous apneas.  That was the first time the tracheotomy or trach was mentioned. They did see that he was improving in person even though he was declining on paper, and decided that we could go home for the weekend with the promise to return the following Monday for another sleep study.

We were confident Oliver was making a turn around. We were wrong!  His sleep study got worse.  Oliver had more obstructions, longer apneas, and higher CO2 levels.  Another concern was that he was not hyperventilating despite his elevated CO2 levels. Oliver was immediately admitted, on March 16, 2009, since it appeared that Oliver was asphyxiating himself. The doctors ran several tests to look for causes of the apneas and obstructions other than floppy airway.  The geneticists and metabolic doctors told us they didn’t see anything too out of the ordinary, but that they would be watching. Neurology thought that it wasn’t brain related and the pulmonary team thought that it might be a genetic condition called Ondine’s curse. The true problem was that Oliver had serious issues and no proponent to point at.  During Oliver’s stay we watched his condition worsen. The rule of thumb is that when a nurse walks fast, you worry; when they run, you panic. He was making the nurses run as he frequently set off his alarms.

After doing one last consultation with all the different departments and exhausting all of our options, we agreed to the tracheostomy. Oliver had his tracheotomy at 1:30pm on April 8th.  A few hours after his surgery, he was breathing on his own and feeding normally.  Finally, we thought problem solved. This was only the beginning of the next chapter in our story. The next evening after the trach was placed; Andy was at Oliver’s bedside and noticed he wasn’t acting normal.  A few minutes later Oliver had a seizure and stopped breathing for 20 minutes. Fortunately, the nurses were able to stabilize him by putting him on the ventilator (April 9, 2009).

This was a major step backwards for us. Oliver let the vent do all the work for about 24 hours until the results of a blood test indicated he was extremely anemic.  Oliver received a blood transfusion that gave his breathing a jump-start. However, his breaths were still very shallow and inefficient. The purpose of the ventilator was to give him bigger more efficient breaths, rather than breathing for him as before. A week after the trach Oliver had a follow up sleep study.  On the positive side of things, he only had a few brief apneas, which allowed the doctors to rule out central apneas. The study also indicated Oliver still had very high carbon dioxide levels, and was breathing very rapidly and in a shallow manner.  As a result of this and the previous events, the doctors told us Oliver would stay on the ventilator for an indeterminate amount of time. Oliver has since been given albuterol, which has brought his carbon dioxide levels down and given him steady strong breaths.

Oliver was sent home on the ventilator after every test came back negative for why Oliver was experiencing breathing troubles. Because they did not have a diagnosis, they could not give us a prognosis.  Oliver came off of the vent Christmas of 2009!  He had his trach until March of 2010. His stoma had not closed on its own so in the summer of 2011 it was surgically closed.  While in surgery to close the stoma they took a muscle biopsy of his thigh.  This biopsy confirmed that he had mitochondrial myopathy complex one deficiency (Mito: A neuromuscular disease that is progressive in its degeneration.) This then explained all of his breathing problems, and now his autism but even with this diagnosis we do not know all of what is to come for Oliver’s future.  So we move forward blindly only with the knowledge that this is Oli’s journey and lucky are those that can share it with him.

July 12th, 2015 – Molly Hess

Check out this week’s Riley story from the Hess family!

Molly’s story begins with my 5 week bed rest stay in the hospital. I began having trouble at 16 weeks gestation. I was put in the hospital at 18 weeks and stayed there until Molly was born. She was born at 2:52 a.m. on a Sunday morning. Molly was born at 23 weeks 5 days gestation. Molly was 1 pound 7.8 ounces and 12 inches long at birth. Those equate to a can & ½ of soup and as long as a Barbie. No one is ever prepared for the “rollercoaster” that comes with a preemie. We certainly were not.

At two weeks old, Molly was very very sick. Molly had pneumonia, sepsis, and possible spinal meningitis. She was too sick to do a spinal tap to tell if she had the latter of the three. We had not been able to hold Molly yet, so my child was sick and I could do nothing about it! I couldn’t hold, snuggle or just try to make her feel better. That is what a mom is supposed to do… She was on 100% oxygen and her oxygen saturations were at 20%. She was gray in color. She was lifeless. As parents, we can never tell you what it was like to hear the doctor tell us that Molly was very sick and the next 24 hours were the most critical. We prayed and prayed that Molly would still be with us in the morning. She was and we are sooo blessed.

She stayed in the NICU for 5 months. We moved from bed spot to bed spot and to different modules. Molly also had multiple surgeries. Molly had one surgery at 6 weeks old to close the PDA between her heart & her lungs. Another surgery was at 4 months to fix the retinas of her eyes due to her prematurity. Molly was fortunate to not need glasses until recently! Of course they are pink and she loves them! =)

At the end of 5 months, it was discovered that Molly didn’t have an airway to support her body. Her airway was the size of a coffee stirrer! The doctors suggested that we have a tracheostomy put in so Molly could breathe. We realized that she may also not be able to eat in the traditional manner….by mouth. They suggested we put in a gastrointestinal tube so she could get her nutrition other than by mouth. Molly stayed at Riley another 3 months so that we could learn how to care for her properly. She came home after 8 months in the hospital, on a home ventilator and with lots of equipment to help her sustain life.

Molly is one of the most amazing people I know. She has been through more than any of us should ever go through. At age 3 we worked with Cincinnati Children’s Hospital to start the process of reconstructing Molly’s airway. A very complicated procedure invented by a doctor at that facility. Over a two year period, a team of doctors reconstructed her airway and were able to remove the trach. Three summers ago her doctors in Cincinnati reconstructed her airway one last time to close the hole where her trach had been….(the stoma). By closing her stoma, they gave her the opportunity to be like every other kid her age….she was able to swim and play in a sand box for the first time last summer.

Molly is a very busy girl and active like any other nine year old. She loves pink, singing songs, adventuring and bugs!!! She is in a regular second grade class and we are sooo proud of her. She has overcome all the odds that were put against her. We occasionally have things that

come up that we need to address, but for the most part Molly is like all the other kids. We hope that you see the world from her eyes as you go through the journey of life. Carefree and willing to learn about others along the way!

June 21st, 2015 – Hannah Jacobs

Check out this week’s Riley story from the Riley kid herself – Hannah Jacobs!

Hi…I’m Hannah Jacobs. First of all I would like to thank all you for everything you are doing for Riley! You are making a difference! My story started July 17, 1995…the day before I was born. This is when my family found out that there was something terribly wrong. This is when they found out that my spine didn’t form correctly…I had Spina Bifida. My mom had an emergency C-section the next day at Memorial Hospital in South Bend. I stayed there for the next month.

Then I became a “Riley Kid”! For the first year I had appointments at least once a month, and I would see several doctors at each appointment. I have had surgeries from head to toe. Too many to count! The one great thing at Riley, no matter what kind of specialist you need, they have the best! That makes it easier for your Mom and Dad, knowing that their child is in the best hands! These doctors and nurses have become part of our family. My dad says that Dr. Cain knows me inside and out! I’m not sure what my life would be like without doctors like him.

Riley has done so much for me, that I decided I needed to give back…that is where BSUDM came into my life. My sister Amy told me that I needed to come to this dance marathon. We had so much fun and met so many wonderful new friends! Amy became more involved in this amazing fundraiser and asked me to start one at my high school! With the help of some outstanding students at PHS we held our first dance marathon last year, raising over $11,000 for the kids at Riley! Last month we had our second DM at PHS…raising over $20,000! Yes the PHSDM ROCKS!!!

I have had the honor of being named one of eight Riley Champions for 2013! I will always be a Riley Kid and proud of it! FTK!

May 24th, 2015 – Caleb Hoppe

On May 21, 2012, at 17 months old Caleb went to his Laporte pediatrician for blood work for unexplained bruising. Later that night we got a call from Caleb’s pediatrician saying go to South Bend Memorial oncology/hematology for another blood draw.

That night in a conference room they told us the horrific news…Caleb has Leukemia. Since it was so late at night by the time all was said and done in the morning we were rushed, by ambulance, to Riley Children Hospital.

That morning at Riley Caleb underwent a bone marrow biopsy and spinal tap to see what type of leukemia, see if it spread to spinal column and brain.  Luckily they found NO leukemia cells in spinal fluid!!! And he was diagnosed with Acute Lymphoblastic Leukemia. He was put on average risk treatment plan (low, average, and high risks plans) because he was under 2, and amount of leukemic cells found in blood samples.

We stayed at Riley for 6 days. In those 6 days Caleb had surgery for port placement, started chemo, had another spinal tap, another bone marrow biopsy, and had blood and platelets transfusions. Saying it was a rough week was an understatement.

Seth and I then had to make a big decision…Stay at Riley for treatments (treatments over 3 years for boys) or change to South Bend Memorial. Riley hospital was absolutely wonderful but we didn’t feel comfortable being 2 1/2 hours away from our doctor. So we met up with the oncologist in South Bend Memorial hospital and loved her. We feel a lot more comfortable being 45 minutes away rather than 2 1/2 hours away.

Leukemia treatment is unusual because it’s in blood and blood travels everywhere. There are no stages. There are 6 phases of treatment: Induction, consolidation, intermin maintenance 1, delayed intensification, interim maintenance 2, and then maintenance. Complete treatment for a boy is 3 years, 3 months and for girls 2 years. Theses phases are all different and involve harsh IV chemo, oral chemo, spinal taps, bone marrow biopsy, steroids, and injections.

Caleb went back to Riley at the end of month 1 for another bone marrow biopsy. My Dr. likes the same set of eyes looking at the samples. Caleb also still gets his daily oral chemo from Riley. And if anything should happen with the port Riley will also be the one to fix/replace. And when we have completed treatment on July 31, 2015 Caleb will go back to Riley to get port removed.

Caleb was in remission early on… June 1, 2012. Although in remission leukemia has the tendency to come back so the treatment is a long process to keep it away for good. Caleb is in the final phase of treatment, the maintenance phase. He now receives IV chemo every 4 weeks, spinal tap every 12 week, oral chemo daily, steroids twice a day for a week every month, and antibiotic on weekends.

Caleb had a rough year last year. We were at the hospital at least 1 time a week. He missed EVERY holiday. Along with harsh chemicals pumped into Caleb’s body he also had numerous blood, platelets, and IVIG transfusions. Caleb is a fighter and now his hair came back, he has more energy, and looks great. What more could we ask for. Bring on July 31, 2015!

May 3rd, 2015 – Isabella Cruz

Find out more about this week’s Riley kid – Isabella Cruz!

Isabella was born with ESRD due to renal dysplasia. While her mommy was pregnant with her, it appeared she did not have any kidneys at all and doctors said she would only live for a few minutes. She is a miracle baby and has beaten all odds. She made it until she was 4 years old without dialysis! She received a new kidney from her mommy on 6/2/13.

Not even 2 weeks after her operation, Isabella went home and was playing, running and having fun like nothing ever happened. And the best part is for the first time in her life, she has normal kidney function!

Riley saved Isabella from dialysis and ultimately saved her life. Her quality of life will be so much better now and she can develop and grow as a normal child would.

Isabella’s favorite color is purple, her favorite food is chocolate anything, she loves all shows on Disney Jr., and she loves cats and dogs. Most of the time she is acting like a kitty at home and even sometimes at school and church.

Isabella, who just turned 5, has a big brother, Connor, who she loves. He is 7 years old. Connor loves the color blue, loves sports including basketball, football, baseball, and he loves Purdue.

Connor and Isabella were born in San Diego, CA. Their dad (Freddy) is from California and graduated from San Diego State. I am from Portage, IN and graduated from Purdue. After Isabella was born in 2009, it was very difficult being without family in San Diego to help with Bella’s medical needs so we decided to move back to my home state of Indiana. In anticipation of her kidney transplant, we chose Indianpolis (we live in Brownsburg) because of the excellent reputation of Riley and IU Health (their transplant program is one of the top in the nation). On June 12, 2013 I as able to donate my kidney to Isabella. It was a scary but miraculous day and she is now thriving! We love living back and Indiana and are so thankful we made the decisions to transfer her care to Riley.

April 26th, 2015 – Lucas Bush

Find out more about our Riley Kid of the Week: Lucas Bush!

This past April, Lucas (then 2 years old) developed a bump on the side of his head, near his right ear and temple. After an ultrasound showing swollen lymph nodes and a round of antibiotics, a CT scan was performed at Lafayette’s IU Hospital. On Monday, April 29, 2013 the scan showed a mass growing on Lucas’s skull. Our pediatrician immediately set us up for further testing to be done the next day at Riley Hospital. Dr. Lee (our pediatric hematologist oncologist) and several great nurses called to prepare us and give us an idea of what to expect.

When we arrived at Riley, everyone was so helpful and informative. We met with Dr. Lee, who is so amazing, and a biopsy was performed that afternoon. On Friday, May 3rd, we received the diagnosis of Langerhans Cell Histiocytosis (LCH), a very rare disease where certain white blood cells grow out of control and multiply quickly. Thankfully, the prognosis was good. Lucas’s treatment plan started with chemotherapy once a week for six weeks, and then once every three weeks for a total of twelve months.

On Monday, May 6th, Lucas’s port-a-cath was implanted and he received his first Vinblastine treatment. Within a couple of weeks, the mass had gone down. By the 6th week, another CT Scan determined the mass was gone and the bone was healing.

Today, Lucas is a little over half-way through his treatments. He never ceases to amaze us by his strength and joyfulness. We are so thankful for Dr. Lee, the entire pediatric Hematology Oncology team and all of Riley’s many great doctors and nurses.

April 19th, 2015 – Emily Brown

I was a pretty healthy kid up until my early teens.  Shortly before my 14th birthday I noticed my ankles were slightly swollen.  Within days they were extremely swollen and my eyes were starting to swell.  I went to my family doctor who ran lab work that indicated my kidneys were not working correctly and he sent my family and I straight to Riley.

We had my first appointment with the nephrology (kidney) team at Riley and they scheduled a kidney biopsy, which revealed I had an autoimmune kidney disease. Autoimmune means my body was attacking itself and in order to treat it I had to take medicines to suppress my immune system.

I was started on high dose steroids but, unfortunately, my disease was very difficult to treat and I had to have several months of daily chemotherapy as well and was on immunosuppressant medications for years. The medications I took had many side effects and I developed glaucoma, diabetes, and nerve and muscle damage. I was implanted with a spinal cord stimulator (a battery in my lower back connected to electrodes that go inside my spine. The battery sends electrical current along my spinal cord to help “turn off” the nerve pain) to help manage chronic pain caused by chemotherapy.

I missed an entire school year and was frequently absent from school.  I had many hospitalizations at Riley throughout my treatment. My doctor at Riley was incredible and, despite having ongoing complications of my illness and it’s treatment, I have been in a remission from my illness for several years and have gone on to have an incredible life and do things I never thought would be possible, like graduate from college, travel internationally, and become a foster parent.  I am forever grateful for the care I received and will always be a “Riley kid” first and foremost.

I graduated from IUPUI with a Bachelors and Masters degree in Social Work. I recently started a new job with Big Brothers Big Sisters of Central Indiana. I also recently began fostering a 2 year old little boy. I have a younger sister, Katie, who attends Purdue and is involved with PUDM.

April 12th, 2015 – Faith Amor

Check out one of our really awesome Riley kids, Faith Amor! Here’s her story, as told by Charity Amor:

Faith was born with no medical problems at all! We started noticing that she was not keeping up with other children her age developmentally by about 6 months of age, which is when our Riley trips began.

First, she had an MRI, which showed there were problems, but gave us no answer about what the cause could have been. For the next year and a half we would make many trips to Riley to see a developmental pediatrician and neurologist in an effort to help Faith and to determine the cause of her problems. Then, two years ago, when Faith was 2, we had a surgery at Riley to put in a feeding tube and do more testing. When the test results came back, it was determined that Faith had a mitochondrial disease, also known as “Mito.” It’s a neuromuscular disease where the mitochondria in the cells fail to produce the energy the cell needs to function properly. It affects every child slightly differently depending on severity.

With Faith, it has affected her ability to walk and talk and function like a normal child should. She can crawl now and pull herself up to stand, but does not walk and has a wheelchair to get around in at school. She does not communicate with words, but definitely communicates to us her needs in other ways. She is a very happy 4 year old who loves music! Her favorite thing to do is to play with her brother! Faith has a long Riley road ahead that will include many more doctor visits and therapies. She is very strong at heart and takes everything in stride.

We appreciate all that Riley has done for us as a family and the support we get at every visit from the doctors to the nursing staff to the lab workers who draw blood for testing. Everyone is so great at Riley!


April 5th, 2015 – Ayden Moody

Ayden was born with a condition called craniosynostosis. This condition caused Ayden’s soft spot to closer prior to his birth. Of course, the soft spot is essential for brain growth so when Ayden was about five months old, he underwent a cranial reconstruction.

The surgery was successful and Ayden started to grow and develop normally. Then when Ayden was about three and a half years old he started to develop some very unusual symptoms. He was having trouble walking and his knees would ‘give out’ and he would wake up with excruciating headaches and they would cause him to vomit until he ended up dehydrated and needed to go to the emergency room. He was also sleeping approximately sixteen to twenty hours per day which is not normal for a little boy.

In June of 2007, shortly after his fourth birthday, it was discovered that Ayden suffered from a condition called Chiari malformation. This condition caused the tonsils at the back of the brain to abnormally hang into his cervical spine, causing an imbalance in his cerebrospinal fluid and also had caused a syrinx to develop in his spinal cord and was causing problem with his knees.

Ayden underwent a Chiari decompression in August of 2007. He successfully recovered from that but once his head began to grow normally and function normally again he needed a revision of his cranial reconstruction. He underwent another reconstruction in June of 2008. Ayden was then suffering from some other issues and a tethered spinal cord was discovered and he then had a tethered spinal cord release surgery in the fall of 2009.

Ayden’s cranial problems continued through a third and fourth cranial reconstruction. Finally in May of 2013, Ayden had a shunt placed to help regulate his cerebrospinal fluid. Although the surgery seemed to be successful, his shunt became infected and in September of 2013 he had to have his shunt removed and had a month long stay at Riley until the staph infection in his brain cleared so the doctors could go back in and place another shunt.

Since November of 2013 Ayden has been pretty well but every year is evaluated to see if anything further is needed. We are currently awaiting the appointment with his neurosurgeon, Dr. Smith, and was recently evaluated by his plastic surgeon, Dr. Tahiri.

No matter what his doctors decide, we know that Ayden is in good hands and that they will do what is needed to take care of him. Ayden has always been very brave and never looked at his condition in a negative light. He feels very fortunate that he is able to leave the hospital each time they fix his problems and knows there are many that are sicker and suffer more than he does. Ayden enjoys collecting pop tabs for the Ronald McDonald house and is almost half way to his goal of a million pop tabs. He also tries to talk to anyone and everyone who will listen to his Riley story because it is always important to spread the world about the hope that happens everyday at Riley.

Ayden Moody

March 29th, 2015 – Ella McBride

Meet our Riley Kid of the Week for this week – Ella McBride! Find out a little bit more about her Riley story below.

From the time Ella was 6 months to a year, she had stopped growing and was not hitting milestones. We were visiting the Dr often and it wasn’t until July 31st of 2006 when she was at her weakest, she was admitted to the hospital and was in heart failure. She looked perfectly normal on the outside, but little did we know that on the inside, her body was slowing dying.

It wasn’t until she was admitted into the hospital and we found out that her blood pressure was dangerously high (running in the low 200’s). I will never forget overhearing the ER dr. telling the nurse to have the chaplain meet us in our room once we get settled. At first, I thought it was such a kind gesture of the Dr. and it wasn’t until much later we realized he had done that because he didn’t know if Ella was going to make it.

After about two weeks of testing and hearing lots of, “ we may never know what is wrong with her”, they found that she had a rare narrowing in her abdominal aorta and narrowings in her renal arteries going to her kidneys. Her left kidney was not functioning well at the time. Basically, what had happened is with the rare narrowing, her kidneys were not getting enough blood and they were telling her brain – we need more blood and that made her heart work overtime, which over time enlarged her heart and it was wearing out, that is how she ended up in heart failure. With meds, her heart began to get stronger and at 15 months old ( in Oct) she had her first surgery ( which saved her life). They opened up the narrowing to allow normal blood flow. She still needed blood pressure meds after surgery.

After her first surgery, she had other complications, which has resulted in several tests, gastro issues, vomiting issues, iron deficiency, continual blood flow issues to her kidneys. Unfortunately a blood clot developed in the graft that they placed to her left kidney, so her left kidney stopped working and as she grew the narrowing to the right kidney returned, so she needed a couple balloon procedures to that right renal artery.

After a two balloon procedures her right kidney stopped growing, so the Dr’s. decided that another route would be best. Continual ballooning of the renal artery would be too risky, so after much deliberation and a second opinion, another major surgery was put into play — an Auto kidney transplant for the right kidney and removal of the left kidney. This was the first time Riley had performed and auto kidney transplant on a child. What a stressful year. The surgeon felt it was best to have a match in place as a back up plan in case the surgery did not work. So, luckily, I was a match. I went through all the same testing as Ella did. The whole experience was very eye opening and humbling.

So, in October of 2011, Ella had surgery. When the surgeon first came out after surgery, he looked very nervous and fidgety. He had stated that he had used the smallest suture that he had ever used and the surgery was much more complex once he got in there and he would like to never do that surgery again. Reassurring right? I actually, really appreciated his candor and honestly. A half an hour later he returned with a completely different demeanor and stated that Ella’s ultrasound looked great and she was peeing buckets! He was so pleased. The surgery was a complete miracle, blessing and success. The several days following the surgery were challenging and difficult for Ella, but she overcame. Her body healed as the months went on and less then a year after surgery we were able to completely take her off her blood pressure meds — something her kidney dr. never thought we would be able to do. She is a little miracle!

Ella will always have follow up visits at Riley and we won’t know until she is done growing if she will need another surgery on her abdominal aorta and her surgeon said she will most likely need a regular kidney transplant sometime in her lifetime due to her kidney being under so much stress her whole life. But, we take each day as it comes and count each day as a blessing.

Ella McBride

March 22, 2015 – Jeremy Dawes

Meet our Riley Kid of the Week for this week – Jeremy Dawes! Find out a little bit more about his Riley story below.

Jeremy- 6 years old, has breathing issues due to asthma. He has been hospitalized on several occasions due to his oxygen levels dropping so low. He is also seen by the Sleep Clinic at Riley for Sleep apnea. He has also had a few surgeries: tonsils removed, and tubes in his ears.

Jeremy’s likes and hobbies:

  • Race cars
  • Legos
  • Motorcycles
  • Baseball
  • Football
  • Basketball


Dawes 5