Thanks for following along on the health struggles that we had with our youngest daughter, Hailey that began when she was just a year old.  I’ve been overwhelmed with the supportive comments and emails that I’ve gotten.  I also had a lot of people ask me what I learned through that experience and what advice I would give to families going through a similar situation.  So without further ado, I’d like to share with you what I learned through this entire process.

1) TRUST YOUR GUT!

I just can’t stress this enough to you.  I absolutely knew that something was wrong with Hailey and I was not going to give up until I got some help.  My gut instinct told me right away that something was wrong.

2) I KNOW MY CHILDREN BETTER THAN ANYONE,  EVEN THE DOCTOR!

I am with my children more than anyone.  I know how they act when they don’t feel well.  In remembering Hailey’s story I hated the fact that I let Dr. M make me feel crazy. I was able to stand up to him eventually, but I wish I had been firmer with him from the very beginning.  After going through everything we went through with Hailey and later with Skylar being diagnosed with autism, I am adamant with doctors when I believe something is wrong.  For example, over the past 8 years, Skylar has had pneumonia 4 times.  I know exactly how she presents with pneumonia.  She can look and act totally fine one morning and start running a fever, develop a horrible cough, and be so excessively whiny that I think my head may explode.  When she starts showing these symptoms I know that she has pneumonia.  The last 3 times I’ve been to the doctor/ER this is what happens:

Me:  My daughter has a history of pneumonia and I know that this is what is going on now. I need you to do an x-ray because she is not going to take deep enough breaths for you to really hear what’s going on in her lungs.

Doctor:  Well, her lungs sound ok, but I’ll go ahead and do the x-ray because of the high fever, cough, & history of pneumonia.

Doctor (30 minutes later):  Wow! You were right.  She has a pretty bad case of pneumonia going on in there.  You sure do know your kid.

Me:  I sure do.  Thanks for doing the x-ray.

3) RESEARCH YOUR DOCTORS

Being a military family we move around quite frequently and because of this I have to choose a new pediatrician, neurologist, and GI doc every few years.  I receive a list of providers from my insurance and I just start researching.  I check the following things:

-where were they educated?

-do they have children of their own?

-what is their past experience?

-what do others say about them?

-for our neurologist, I searched for someone who specialized in developmentatl disabilities and/or epilepsy.

-for our GI doc I searched for someone who specialized in acid reflux.

I am happy to report that my research paid off as our pediatrician here in Prescott is wonderful and our neurologist and GI docs in Phoenix are extremely thorough and wonderful as well.  I’m confident that we will not need to change physicians while we are here, BUT I would not hesitate to change doctors if I felt that it was necessary.

4) THROW RANK OUT THE WINDOW!

*This one is specifically for my readers who are military/military dependents.*

I was blessed enough to have a father who was able to step in and be firm with Dr. M.  Unfortunately, this is not the case with the majority of military families.  This is one thing I’ve thought about over the past 9 years.  What would have happened if I hadn’t had my father to step in?  It shouldn’t have had to get to the point where rank had to pulled on Dr. M.

When dealing with your military provider, you should be able to advocate for your child without fear of repercussion against you or your spouse.  Your child’s health and wellness should come before any consideration of rank by both you and the child’s provider.

I hope that these things I’ve shared will help you in some way when you are searching for and dealing with your child’s, or your own, health care providers. Our wish is that no one ever has to go through what we went through with Dr. M.

Blessings to all of you!

JuJu

*This is Part 4 in a series of Hailey’s health struggles.  If you are new to the blog or to Hailey’s story click here to read it from the beginning.*

At the end of Part 3 of Hailey’s Story, Skylar had suffered a grand mal seizure a week and a half before we were scheduled to move from Arizona and Hailey was gaining weight, albeit slowly.

Three days before the girls and I were scheduled to fly back to Virginia, my dad flew into Tucson.  He came in not only to drive across country with Chris and our dog, but also to accompany me to the meeting with the hospital commander regarding Dr. M.  That night we sat down at the table to go over what we wanted to discuss with the commander.  We also went through the key points I had marked in Hailey’s medical records from both the clinic in Tucson and from her hospitalization in Virginia.  My goal for the meeting was to discuss the chain of events that led to Hailey’s hospitalization, the lack of respect that Dr. M had shown us as Hailey’s parents, and express our concern of the possibilty of Dr. M hurting future patients.

The next morning my dad and I met with the hospital commander who was very kind and extremely professional.  He listened to our side of the story and we had both known and expected that he would speak with Dr. M prior to our meeting.  He assured us that he would again be speaking with Dr. M following our meeting.  We in no way expected him to bad mouth a doctor that was under his command, but he did not defend him to us either.  The one thing that I really appreciated from him was that he took the time to review all of Hailey’s records not only from Tucson, but her lab work, test results, and doctor’s notes from Virginia.  He then said “Mrs. Coryell, I know that our meeting today was concerning Dr. M, but are you open to hearing my thoughts on Hailey’s condition?”  I of course wanted to hear his thoughts.  He shared with me that his specialty was autoimmune disorders and that in reading her history she really presented as a child with an autoimmune disorder.  He was aware of her IgA deficiency but he felt that it ran quite a bit deeper than just that.  I was appreciative of his concern that he showed for Hailey and left knowing that he would investigate Dr. M’s actions further.

The girls and I returned to Virginia and Chris and my dad joined us a few days later.  We got settled in and started the referall process for Skylar to be seen by the neurologist at Walter Reed. Towards the end of June at about the 3 month mark of Hailey’s NG tube, Dr. Lee scheduled Hailey to have a G-tube placed.  He knew that Hailey was capable of gaining weight and all of her metabolic tests had come back negative, but she was still really balking at eating anything by mouth.

She came through the procedure like a champ and only had to stay in the hospital one night.  The switch over to the G-tube was great.  Hailey’s face finally started to look better.  She had been having skin issues from the tape for quite awhile.  It was also nice to not have to worry about the NG tube getting snagged on something.  I personally liked not having a tube that people could see when we were out in public, which significantly cut down on the amount of questions from strangers.  (I had definitley reached the point where I was tired of explaining to people why she had a feeding tube.)

The next few months Hailey made tremendous strides developmentally.  She was walking all over the place and loved riding her little trike that grandma and grandpa had gotten for her.  Later in the summer both girls were evaluated by a developmental pediatrician and Hailey had not only caught up on everything that she was behind on, she was actually measuring ahead in many areas.  We were so thankful to hear these results as we were already well into the testing and evaluation that would lead to Skylar’s diagnosis of Autism.

After 4 months in Virginia and Chris’ graduation from Officer Training School we moved to our new assignment in Ohio.  That winter was a tough one!  Hailey was ill constantly.  She had 16 infections (sinus, upper respiratory, and gastroenteritis).  It was a vicious cycle all winter long:

Infections…Antibiotics…Thrush…Antifungals….and repeat, over & over!

Shortly after arriving in Ohio, I received a phone call from a friend in Tucson that Dr. M was no longer in the Air Force.  We do not know exactly what happened but she did tell us that when she asked at the clinic she was told he was no longer in the Air Force and that was all they could share.  I recently googled his name and did not find any information on him.  I was happy to move on from all of the anger, hurt, and frustration that was associated with Dr. M.  I knew that both Hailey & Skylar needed ALL of my energy and focus.Hailey ended up having her g-tube for a little over 2 years.  We were so thrilled when she was eating enough by mouth to no longer need it.  We had a HUGE celebration to mark the removal of her tube.  The GI doc told us that she would always be pretty small and quite frankly I was just thrilled that she was healthy.

Many of you have asked how Hailey is today?  She is 10 years old and in the 5th grade.  She has had some GI issues the past year.  Last year she had a lot of problems with gastric-reflux and she was maxed out on the amount of medication she could take.  It slowly got better and shortly after we moved here she started being adjusted by a chiropractor on a weekly basis.  The chiropractic adjustments have helped her tremendously and her new GI doctor plans to wean her off all medication at her next visit.

Hailey definitely struggles with attention and focus, but we are working closely with her teacher.  We ultimately want her to be successful.  We don’t want her to become discouraged, and her teacher this year has been really good with her. Hailey has a very sensitive spirit and does not respond well to raised voices.  We have set up checklists at home to keep her on task and allow her to “self-check” to make sure she has done what she needs to do.

Hailey is extremely active and she recently joined the drama club and a running club called the merry milers. She loves to read and most nights she is begging for just “5 more minutes” to read.  She also started taking guitar lessons the week after we moved here and is doing really well.  She has learned “The Star Spangled Banner”, “Somewhere Over the Rainbow”, and the opening to the Metallica song “Nothing Else Matters”. Chris has already asked her to play the National Anthem at his promotion ceremony to Major next year.  She has happily agreed!

*This is part 3 in a series of posts about Hailey’s health struggles.  Click here to read Hailey’s Story from the beginning if you’ve missed any.*

When I last left off, Hailey had been discharged from the hospital after 8 days of extensive testing and treatment.  We got set up at my mom and dad’s house with home health equipment and Dr. Lee scheduled us for weekly appointments to check Hailey’s weight, bloodwork, & progress.

The nutrition plan for Hailey was to have tube feedings that ran most of the night and to encourage as much self-feeding as she could tolerate during the day.  As the days passed and the antibiotics continued to help her pan-sinusitis, she ate a little bit more each day.  The tube feedings alone did wonders for her and it was amazing to see how much more active she was in the weeks following.  In fact, within 3 weeks of tube feeding and antibiotics she started crawling, pulling up, and taking a couple of steps.  It’s amazing what nutrition will do for a baby!

Towards the end of April, Dr. Lee gave me the greenlight to take Hailey home to Arizona.  Chris was finishing up his degree and would then head to Officer Training School (OTS) in Alabama for 3 months.  The plan was for us to return home for 3 weeks in which we would sort through our stuff, get ready for the move and celebrate Chris’ graduation.  The girls and I would then fly back to Virginia and live with my parents during Chris’ time at OTS as we were already set up with Dr. Lee and I definitely needed some help with the girls.

We returned to Arizona with mixed emotions.  We were thrilled to be back home with Chris and the rest of our family in Arizona, but I was anxious about returning to a place where we got absolutely NO medical help.  One of the stipulations of returning home for those 3 weeks was that we had to take Hailey to the base clinic for weight checks every 3-4 days and call Dr. Lee’s office with the results.  I had no problem with doing that, however I was concerned of what my reaction would be if I ran into Dr. M at the clinic.  I was so angry with him, his lack of action, & his all around dishonesty that I was seriously afraid that I might tackle him upon seeing him.  That led to many crazy thoughts including me going to jail, my husband being kicked out of the Air Force, and my children growing up visiting me in prison.    I knew that before I visited the clinic I was going to have to pray really hard for peace and restraint.

The first two visits to the clinic went really well.  Hailey hadn’t gained weight, but she hadn’t lost weight either so I was happy.  She was crawling quite a bit so I wasn’t surprised by her lack of weight gain.  A few days later as I was sitting in the waiting room waiting for the tech to call us back to weigh Hailey I heard a familiar voice.  I knew immediately it was Dr. M even though my back was turned to him.  My face got really hot and my heart started racing.  I literally felt as though I was going to explode.  At that exact same moment the tech called out “Mrs. Coryell?  You can bring Hailey back now.”  As I got up and turned around I made eye contact with Dr. M.  His eyes were as big as saucers and I must say he actually looked frightened.  As I passed him he said “How are you, Mrs. Coryell?”  I stopped dead in my tracks.  Nine years later I can still remember every word that I said to him.

“Really?  How am I?  Look at my kid!  She has a tube down her nose feeding her.  She will be having a g-tube placed next month along with a liver biopsy to determine the extent of her liver damage.  So how do you think I’m doing?  I can’t believe you even have the gall to ask me that.

Dr. M,  I’m going to do EVERYTHING in my power to ensure that you don’t ever hurt another child again!  As you can clearly see, my child was not perfectly healthy like you told me she was.”

With that, I turned and walked into the exam room.  Amazingly enough my head was still attached, although I can guarantee that my blood pressure was through the roof.  I uttered a silent prayer of thanksgiving that I had controlled my emotions and that I wouldn’t be spending my forseeable future in prison.  As soon as I walked out of the clinic I called Chris, my dad and my sister to tell them of my encounter with Dr. M.  It was during the conversation with my dad that I realized that I needed to lodge an official complaint about our experiences with Dr. M.  My dad said that he would call and schedule an appointment for us to meet with the hospital commander.

After much discussion between my dad, Chris and I, we decided that Chris should not be involved in any dealings with the hospital staff.  As an active duty military member Chris is unable to sue the government for any reason.  However, I could bring suit on behalf of Hailey if we decided to do so.  Because of this, it was decided that my dad and I handle this situation.  Although we didn’t plan on suing, we thought it was best to be prudent in this matter. We would meet with the hospital commander 2 days before our scheduled move.  My dad would fly in for the meeting and then drive across country with Chris and our dog to Virginia.

In the early hours of Sunday, May 5, 2002 with a week and half left until we went back to Virginia, we were thrown one of the craziest loops EVER.  Chris and I were up early getting ready for church as I was singing that morning with my friend Louanne.  When I went into Skylar’s room to get her up I found her laying in bed with her eyes open but acting very strange.  She kept saying the word “no” in really slow motion over and over.  I carried her out to the couch and she continued to act strange.  She wouldn’t sit up or speak to me.  I picked up the phone and immediately called my sister.  She had been up late the night before and it was early but I knew I needed to call her.  Being an ER/trauma nurse, she was my “go to gal” in medical situations.

Me:  Sorry to wake you, but Skylar is acting really strange.

Jenny:  What do you mean?  What is she doing?

Me:  She’s not very responsive.  She’s breathing fine, but won’t respond to me and isn’t talking.

Jenny:  Julie, she’s only 1, she’s not going to talk to you.

Julie:  Hello???  I’m talking about Skylar, not Hailey!

Jenny:  Oh my gosh!  I’m on my way!

As soon as I hung up the phone with Jenny, Skylar started seizing.  I immediately called 911 and amazingly enough they were walking through our front door within minutes.  Jenny walked in just after them.

They asked me what seemed like a million questions trying to determine if this was a febrile seizure.  Skylar had not been remotely ill prior to seizing and with the length of the time being unresponsive and convulsing, I knew that this wasn’t a “fluke”.  The paramedics decided to transport her to the hospital and I can remember sitting in the back of the ambulance thinking “what is wrong with my children?”  First Hailey, now Skylar!  My mind raced with a million thoughts as we rushed towards the hospital.

Upon arriving at the hospital, we met with the neurologist on call and he ordered a vast array of tests in order to determine what was the cause of Skylar’s seizure.  She had a CT scan and an MRI both of which came back normal.  We would have to wait for an EEG until the following morning.  Because of the length of Skylar’s seizure and the time it was taking her to come around afterwards, they decided to hospitalize her.  As Chris, Jenny, and I sat in a dark hospital room waiting with Skylar who was still unconscious Jenny said “I left the house so fast after you called that I didn’t even put a bra on.”  Chris answered “Well, I’m not wearing underwear because I threw on the first thing I could find.”  Seeing the humor in this situation I said “Wow! Together, the 2 of you are practically naked!”  You see, humor has always been a coping mechanism for us.  I’ve always thought, “I’d rather be laughing than constantly crying.”

The following morning Skylar had her EEG.  We waited all day and the neurologist came that evening to tell us that her results were GROSSLY abnormal and that she had a seizure disorder.  He said that she would have to go home on medication.  About that time, my brother in law Jeff walked into the hospital room with Hailey (who of course had her NG tube).  The doctor got the strangest look on his face and asked who’s kid that was.  When we told him that she was our youngest and explained the situation, he said that we needed to have some genetic testing done on both girls.  He knew that we were moving the following week so he shared a list of tests that we should ask for as soon as we arrived back to Virginia.

I  admit that when we left the hospital that night heading to the pharmacy to pick up Skylar’s new meds I was seriously overwhelmed and feeling a bit sorry for myself.  I remember thinking “Lord, I need to hear from you.  Please help me!”  I pulled up to the stop light and when I turned my head and looked to the left, I saw that I was stopped next to one of the largest cemeteries in Tucson.  I was in the car with my sister and I remember saying to her “OK!  There is a lot going on with my kids right now, but you know what?  They are alive!”  I knew that I needed to focus on that and just take one day at a time.

Thanks for continuing to follow along on our journey.  I know it’s been lengthy, but I had forgotten how much stuff actually happened during this time period.  I will attempt to “wrap it up” in my next post.

Blessings,

JuJu

In reading Part 2 of Hailey’s Story,  I realized that I left out a really important part of who and what got us through such a difficult time. It was my intent to share this part of the story in Part 2 and after publishing the post I realized I had not done so. I would be remiss in not sharing about a wonderful group of people that reached out to us in one of our greatest times of need.  As many of you know, we are Christians.  Our faith is not only a part of who we are, it is the core of who we are.  We take seriously our belief that God has a plan for our lives.  Our ultimate desire is to be living in the center of His will.

One morning while Hailey was in the hospital there was a knock on her door.  I looked up to see 2 gentlemen in suits standing in the doorway.  I immediately recognized them as pastors from my parents’ church, Immanuel Bible Church (IBC).  We had always attended their church when we were in town so I knew right away that one of the men was the Senior Pastor, Michael Easley and the other was the Associate Pastor, Steve Holley.  The thing that struck me was that they had sent the 2 “top guys” to visit us at the hospital.  This was a HUGE church with thousands of members and many pastors.  I remember later telling Chris and my parents that I was thankful that these 2 men took time out of their busy schedules to come visit and pray with us in the hospital.

At the time of their visit, Hailey was undergoing a sweat test to determine if she had Cystic Fibrosis (CF).  It was definitely an emotional time as I had cared for so many older adolescents with CF and had seen how CF had ravaged their precious bodies.  I believe God’s timing was perfect in sending these 2 pastors to pray with us during this time.  We talked for quite a while and I answered their questions.  Pastor Easley then asked if they could pray over Hailey.  As he prayed I immediately felt such a peace.  I was so thankful that they had come to see us.

Right after they left, Hailey’s nurse came into the room and the following exchange took place:

Nurse: Who were the suits?  Lawyers?

Me:  What?

Nurse:  Well, all the staff are betting on who the guys in suits were.  I know your story and the difficulty in getting help for Hailey so my vote  was for lawyers.

Me:  They aren’t lawyers, they are pastors from my parents’ church.

Nurse:  Crap!  Pastors!  I didn’t even think of that!  With the suits on I thought for sure they were lawyers.

As she walked out of the room I heard her say “They were pastors!”  I could hear all the staff at the nurses station from my room respond with “Oh, pastors!”  It was definitely the bit of comic relief that we needed.

There were also 2 women who were a tremendous blessing to me during Hailey’s hospital stay. The first woman was a secretary from the church, Liz Bryant.  I remember the first time Liz called me.  She had the most cheerful voice and hearing her on the other end of the phone immediately lifted my spirits.  She called to ask me how Hailey was and said that the pastors were about to meet and pray over the prayer requests from the congregation.  She asked if there was anything that they could specifically pray for.  Liz called me EVERY morning to get an update and get specific prayer requests.   What a tremendous blessing she was to me!

The second woman was the music secretary, Carolyn Usher.  My parents were really involved in the choir ministry at Immanuel and that is how she knew of our story.  Carolyn and I never spoke during the hospital stay but she was in constant e-mail contact with my mom.  She would write the most amazing prayers for our family and send them to her.  My mom printed them all off and brought them to me at the hospital.  Reading those prayers brought me so much comfort.  Carolyn was not only a source of comfort during Hailey’s illness, but also during Skylar’s diagnosis, the multiple times she was hospitalized for severe seizures as well as during my sister’s battle with breast cancer.  In October of 2008, Carolyn and her husband John were in a car accident while on vacation.  Carolyn sustained numerous injuries which eventually led to her passing one month later.  I can’t even begin to imagine how many people were affected by the loss of this precious woman.  Our loss was truly Heaven’s gain.  I’m confident that the first words she heard in heaven were “Well done, good and faithful servant!”

These 4 people along with countless other members of IBC surrounded us with love and prayers during such a scary time.  I can’t even begin to express my gratitude to all of them.  Immanuel’s mission for as long as I can remember has been to:

-Seek Him Constantly, Serve Him Faithfully, & Share Him Boldy!

These wonderful people surely did just that!

With love & thanks,

JuJu

*This is the 2nd part to a post that I wrote about our youngest daughter, Hailey.  If you haven’t read part 1 you can either scroll down, or click on “A Scary Time (Hailey’s Story) Part 1“.*

As we were ushered back to meet with Dr. Lee, the GI specialist in Virginia, we were very anxious and didn’t know what to expect.  I had brought a print out of the labs that were drawn the previous week with us and handed them to Dr. Lee for him to look over.  He immediately started circling results on the page and making notes.  He asked us to explain to him what had been going on.  We quickly caught him up on the problems we had been having with Hailey for the previous few weeks and shared with him how Dr. M had told us that nothing was wrong with Hailey and that she was completely healthy.  I’ll never forget the look on his face when I said that.  He then proceeded to tell us the following.

“Dr. M did a very basic panel of labs, however the results that I have circled here clearly show that something is going on inside of Hailey.”  As he pointed to different results he said “This test tells me that Hailey has some type of inflamation going on somewhere in her body.  This test tells me she has some type of infection and this test tells me that something is going on with her liver.  So no, I wouldn’t say that everything with Hailey is ok.  It is clear that she needs quite a bit more bloodwork and testing for us to figure out was is going on.”

We talked about a plan for the next couple of days which included extensive bloodwork and trials of different formulas to see if she would take them.  We left the office with an appointment to go over lab work and have a weight check 2 days later.  We left the office feeling overwhelmed, but very thankful that we were finally getting some help.

We were quickly nearing the time to return home and on the advice of both Dr. Beth and Dr. Lee we decided that it was in Hailey’s best interest for me and the girls to stay in Virginia for further treatment while Chris flew home to finish up his final 2 months at the University of Arizona.  This was really hard on Chris as he did not do well being on the other side of the country while Hailey was so sick and we still had no idea what was going on.  Thankfully, he had my entire side of the family to look out after him while he was in Tucson.

After 2 more visits to see Dr. Lee that week, further blood work, and continued weight loss, he decided to admit Hailey to the hospital.  He prepared us ahead of time that upon admission they would have to place a feeding tube through her nose in order to give her nourishment.  As sad as that made me for Hailey, I absolutely knew that was what she needed as she wouldn’t eat anything.  The day Hailey was admitted she was 11 months old and weighed just under 15 lbs.  The next morning, my sister Jenny, who had just returned home to Arizona the day before, got back on a plane to Virginia to be with us through this scary time.

Hailey was admitted that evening and was placed in a private room on the hematology/oncology unit.  Earlier in the week Dr. Lee had discovered that Hailey had an IgA deficiency which meant that she lacked the antibodies to fight off infections like sinusitis, pneumonia, GI infections, upper respiratory infections and a slew of other common illnesses.  There is no common treatment for IgA deficiency.  It would just mean that Hailey would need longer courses of antibiotics to fight any infections as well as that it puts her at a greater risk for developing autoimmune disorders in the future including Lupus, Celiac Sprue, and Rheumatoid Arthritis.

That first evening was a flurry of activity as the nurses started an IV,which had to be re-started twice overnight, placed the naso-gastric (NG) tube, which also had to be re-inserted twice due to Hailey’s continual vomiting of the feedings, and they drew quite a bit more blood.

Later the next day my dad brought Jenny straight from the airport so that she could be my medical “eyes and ears” during the many visits with multiple doctors and specialists.  I was thankful to have her there to really listen to the medical ins & outs as I just tried to process as much as I could and be there to comfort Hailey.  As we were meeting with a team of doctors that afternoon, one of the residents made the mistake of saying “Your daughter is REALLY sick!  What took you so long to bring her in?”  Oh, this poor man!  He had no idea the wrath he was about to incur.  Jenny, who had been sitting, flew out of that reclining chair faster than I could have imagined.  She was in that doctor’s face before I could process what was going on.  “ARE YOU KIDDING ME??  You have no idea what my sister has done for Hailey.  She has been telling Hailey’s primary doctor for the past 3 weeks that something was really wrong with her.  She flew across the country to get her help because her doctor in Arizona was worthless.  I suggest you actually listen to Julie’s story before you make any more stupid comments.  Got it?”  We actually never heard another word out of that resident again.  He quietly stood in the background as the team rounded every day we were there.

Over the next 48 hours the following diagnostic tests and additional bloodwork were performed on Hailey:

MRI of the Brain

CT Scans of the Head, Neck, & Abdomen

Ultrasound of the Abdomen

Upper & Lower GI series

Sweat test for Cystic Fibrosis

Bloodwork for various types of cancers, mitochondrial disorders, autoimmune disorders, & metabolic disorders.

The time we spent in the hospital was truly exhausting.  We anxiously awaited results from various tests.  We were always relieved to receive word that certain tests would come back negative, but that also put us back to square one not knowing what was causing Hailey to be so ill.  We prayed without ceasing that we would find out what was wrong so that we could treat it and help her get on the road to recovery.  Dr. Lee had already told me that she would definitely be going home with the NG tube and most likely need a gastric tube (g-tube) placed in her stomach in a couple of months.  The doctors wanted to make sure that there wasn’t something metabolic going on with her and that she was able to gain weight before they surgically placed a g-tube.

On the morning of day number 5, Dr. Lee and another GI doctor from his practice walked into Hailey’s room and said the words we had been waiting to hear:

“We know what is going on with Hailey!  There are several things that are going on and together they are making her really sick.  We saw the CT of the head and read the radiologist’s report.  Hailey has pan-sinusitis.  Basically, all the sinus cavities in her head are completely blocked and infected.  Unfortunately, coupled with the IgA deficiency and the lack of antibiotics prescribed by her doctor in Arizona, it has really gotten out of hand.  You were right in taking her in when you did as she needs to be treated.  It definitely is NOT viral.  The infection has gotten so bad she is becoming septic.  We need to start her on antibiotics immediately.  The amount of pain that Hailey is probably experiencing has got to be excruciating.  We can’t believe that she isn’t constantly crying.  The extent of her infection has also caused her to go into GI shutdown which is why she wasn’t eating or going to the bathroom.  Lastly, the sepsis has also effected her liver.  Her liver enzymes are 10 times the normal level.  We need to do a liver biopsy to determine the extent of the damage.  Hailey is extremely lucky!  Much longer and she could have possibly needed a liver transplant.”

At this point, I had a million things going through my mind.  Some of which were:

-I was thankful that we knew what was going on and the next steps that we needed to do to treat it.

-I was overwhelmed by everything that the doctors had just told me.  Even though I’m a nurse, I’m a mom first.  It was hard to see my baby so miserable.  The toughest thing was that she couldn’t tell me “where it hurt”.

-I was raging on the inside at Dr. M who had let his pride get in the way of treating my daughter. He knowingly chose not to treat Hailey when labs indicated further testing was needed.  He had definitely not heard the last of the Coryells.

-I was wondering what the road to recovery looked like for Hailey.  Even with these results Dr. Lee said that Hailey would need to be tube fed for at least a year and that the IgA deficiency would leave her prone to lots of infections and possibly a pretty “sickly” childhood.

Hailey was started on IV antibiotics immediately and the nightly tube feedings continued.  Each night she tolerated a little bit more food.  Over the next few days the staff came in and taught us everything we needed to know to take Hailey home with her NG tube.  They also got us all set up with a home care company that would be bringing everything to my parents’ home.  I knew that it was best for us to stay in Virginia until Dr. Lee signed off on us going back to Arizona.

Eight days after we walked through the hospital doors, Hailey was discharged.  Tired, relieved, thankful, and still a bit unsure, I emerged from that hospital a completely changed woman.  More than anything I was thankful that Hailey was alive.

*Stay tuned for part 3 of Hailey’s story.  Thanks for traveling this road with us.*

Much love!

JuJu

As I started outlining the story of Skylar’s diagnosis, I realized that there was a significant delay in progressing with testing due to many issues that we had with Hailey.  Because of this and the fact that both girls’ medical issues impacted decisions we made for the future, I realized I should definitely share Hailey’s story.

Hailey was born in April 2001 a healthy 7lbs 11oz.  My pregnancy was uneventful and I had a pretty easy delivery (well, as “easy” as childbirth can be).  Besides being jaundiced for the first week, Hailey was completely healthy.  Hailey took to nursing right away and was adamant about not taking a bottle.  This was definitely my 1st indication of how strong-willed Hailey was. 

About a month after she was born she started showing signs of colic.  She would cry every evening between the hours of 4:oopm and 7:00pm without fail.  This continued for 3 months and just when we thought we might pull our hair out, it stopped.  Hailey continued to grow and gain weight although she was frequently ill with ear and sinus infections.  As she continued to reach each milestone, we weren’t overly worried about the recurrent infections and kept thinking and praying that she would grow out of those.

At this point, we had noticed that Skylar, who was not quite 3, had stopped talking quite a bit.  She was definitely well behind her cousin Becca who was 6 months older.  I was trying not to compare as at this age; 6 months difference is really quite a lot.  I remember chatting with my sister, Jenny and mentioning that Skylar wasn’t doing many of the things that Becca could do.  At her next doctor’s appointment I mentioned to the pediatrician my concerns and he assured me that she “looked fine” and that all kids develop at different rates. 

In February of 2002, Hailey went in for her well-baby check.  We had to reschedule her appointment several times as she was never well enough to get her scheduled vaccinations.  At this point, she was still nursing as well as eating solid foods, but I noticed that she had stopped gaining weight.  She was still wearing 6 month old sleepers and she was almost 10 months old.  She was also not fully crawling yet.  She would “scoot” around a bit.  Her appointment went fine, the doctor said that she looked healthy and happy.  Again he told me that all kids reach milestones at different times and that there was nothing to worry about.  She received multiple vaccinations that day and as always, I pre-medicated her prior to receiving the vaccines as both my girls always spiked a fever afterwards. 

That evening Hailey was extremely fussy and was having difficulty nursing.  She ran fever through the night and by the time morning came she was completely miserable.  She would not nurse at all and she of course would not take a bottle or sippy cup.  I couldn’t get her to eat anything, not even a cracker which she had always loved to nibble on.  After a day or two of this I got her back into the docs office.  He told me that she had a virus and that we just needed to “ride it out”.  I expressed my concern as she was not eating or drinking at all.  He told me that she was not showing any signs of dehydration and I didn’t need to worry about it.  I still didn’t have any confidence at what the doc was telling me and I’m sure he could see that on my face.  He turned to me and said “Mrs. Coryell, I am a pediatrician and you are just a nurse.”  I was flabbergasted to say the least.  I’m amazed that I had enough gumption to reply “You may be a pediatrician, but you don’t even have children.  I am a MOM, that trumps your degree any day!  I will be back in the next few days if she isn’t any better!”

I tried my best to get her to eat or drink anything I could over the next few days.  As time passed and she kept refusing to eat or drink, I called the doctor’s office back and told them to send a message to Hailey’s doc.  The message read “my baby is STILL sick.  Not eating. Not drinking.  I’m not going to leave you alone, so you’d better help me now.  If you don’t know what’s wrong you need to refer us to someone who can help us.”  I’m pretty sure this just aggravated the doc.  I got a call back that we were to take Hailey to have blood drawn,  that we were being referred to a Nutrionist, and that we needed to write down all of her food for the next 48 hours.  I remember saying to the nurse “I don’t need to see a nutrionist!  My kid will NOT eat.  It’s not that I don’t know what to feed her.  Have you seen my other child?  She’s eating and gaining weight.”  After I hung up the phone I turned to Chris and said “If I walk in this appointment and the nutritionist brings out the food pyramid, I am going to lose it!” 

As we sat down with the nutrionist, I pulled out my notebook with the calories that I had tracked for Hailey for the previous 48 hours.  The first day was 113 calories and the second day was a mere 65 calories.  Sadly, I had worked so hard for those calories.  Putting butter on her ritz crackers and constantly trying to get her to eat anything and everything I could.  Clearly, my numbers showed how little I could get her to actually consume.  When I looked up from my notebook, the nutritionist said “I really want to go over the food pyramid with you so that you know what Hailey needs to be eating in order to grow”.  Immediately I got that “warm” feeling.  I could tell that my face was getting redder by the second and my heart rate was through the roof.  I interrupted her immediately and assured her I did not need her food pyramid talk.  I explained the situation and told her that I was sorry if the doctor gave her the idea that I didn’t know what to feed my daughter, but that we did NOT need her services.  I told her that I didn’t need someone to tell me how to get extra calories into my child, but that I needed someone to tell me WHY my child had completely stopped eating.  With that, we walked out of the nutritionist’s office with no answers and feeling worse than when we walked in there.

On the drive home I mentioned to Chris that I had still not heard anything about the results from Hailey’s bloodwork.  He decided to run into the lab and ask them for a copy of her results.  When Chris brought them out to me, I immediately noticed that several of her readings were off and that she definitely needed further blood work done.  I put in a call to the clinic and received a call back from the nurse a couple of hours later.  She said “Dr. M says that your daughter’s labs are completely normal and that you have nothing to worry about.”  At this point, I knew that we needed help and we needed it fast!

The four of us were scheduled to leave in a few days to northern Virginia to visit my mom & dad for Spring Break.  My sister and her family would be flying in the day after for vacation as well.  I called my dad and told him that I wasn’t sure if we should be traveling with Hailey as she was still not feeling well and hadn’t eaten much all week.  I’ll never forget his response. “Julie, you get on that plane and get yourselves here.  We are going to get you the help you need!”  For the first time in a couple of weeks, I felt that everything was going to be alright.

We arrived in Virginia about 48 hours later and as my dad took Hailey from me at the airport he immediately commented on how small she was.  My mom was working for 2 internal medicine doctors at the time and she told us that the female doctor in the practice, Dr. Beth,  had agreed to come over to the house the following morning to check Hailey out and give us her thoughts.  The following morning as Dr. Beth walked into the house she said “Julie, your mom has filled me in on your situation a little bit and I’m going to do a quick physical on Hailey.  I just want to tell you though that some babies are just small and that there might not be anything to worry about”.  I told her that I was just thankful that she came over to give us a 2nd opinion.  As I took Hailey’s pj’s off the doctor’s smile immediately changed to a look of alarm.  She quietly went about doing her assessment and then said “Ok….this clearly goes beyond just being a small child.  Hailey looks like a head attached to a skeleton.  She is extremely thin and has very little strength.  I’m going to step into the kitchen and make some calls and see who I can get her in with”. 

As she walked into the kitchen I immediately started crying.  I was not only crying because I was worried about Hailey, but as crazy as it sounds, I was also relieved.  I had been telling her doctor for weeks that something wasn’t right with Hailey and he kept telling me she was fine.  He had made me feel as though I was losing my mind.  To finally receive some confirmation that something wasn’t right and that I wasn’t crazy was such a relief. 

After a few minutes in the kitchen, Dr. Beth came out and told us that we had an appointment with a pediatrict GI specialist in about 2 hours.  I knew that we were dealing with something pretty serious as it normally takes months to get in to see this kind of specialist.  She told us that we needed to call the clinic as they needed our insurance information to get authorization for our visit.  I was worried how this was going to go as Tricare had a really wonky system at the time.  We lived across the country and I knew that we would have to have a referral from Hailey’s doctor, Dr. M, in order to be seen “out of our network of providers”.  This was going to be tricky.

Chris called the base clinic back in Tucson and left a message for Dr. M that we needed for him to put in a referall for Hailey to see this specialist.  Almost immediately we received a call back from the nurse with a message from Dr. M.  He was refusing to put in the referall “as there is NOTHING wrong with your daughter”.  I went from frustrated to FIGHTING MAD.  I knew that I needed my dad’s help at this point.

My dad had stayed home from work that morning so that he could help us with whatever we needed. For those of you who don’t know, my dad retired as a full Colonel in the Air Force just months prior to Hailey getting sick.  Growing up he always instilled in both Jenny and me that we were not to brag about his rank and although he had promoted through the Air Force up to a Colonel that “true promotion came from the Lord”. I had never seen my dad “pull rank”  to get anything he ever needed.  Until now!  He picked up the phone and called the medical clinic in Tucson.  The following was the side of the conversation I heard:

“My name is Colonel Adang and I need to speak with Major M immediately.”

“No, he can’t call me back.  He needs to speak with me now.”

“Major M? My name is Colonel Adang and I am Hailey Coryell’s grandfather.  We need you to put a referral in for Hailey to see this specialist in Virginia right now.”

“Major M, I don’t like to pull rank, but we are talking about the health and well-being of my granddaughter.”

“Well, the doctor who has just come to our house to assess her disagrees with you and believes that there is something significantly wrong with Hailey.”

“If you continue to argue with me I’m going to contact your hospital commander directly.”

“We are leaving for our appointment now and you have 20 minutes to get this referall put in and pushed through the system or I’m going to call the hospital commander immediately.”

 As we got into the car to head over to our appointment we were so worried that we would miss this opportunity to see this specialist because of the referall.  You can imagine our relief when we walked into the doctor’s office and the secretary said “Hi Mrs. Coryell.  Dr. Lee is ready for you now and we just received authorization from Tricare for your visit today.”  I’m pretty sure that you could hear an audible sigh of relief from all of us.

*I will share Part 2 of Hailey’s story tomorrow as sharing events that I recall from over a several month period created a blog post that was much longer than I anticipated.*

Thanks for taking the time to listen to Hailey’s story!

JuJu