A Scary Time (Hailey’s Story)Part 2

*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

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4 thoughts on “A Scary Time (Hailey’s Story)Part 2

  1. Please tell me that Dr. M has been kicked out of the Air Force! Yes, you do not have a medical degree, but you are with your child for 24 hours a day! That has got to count for something! I hate it when doctors think parents are clueless and that they know our children better than we do!

    • I’ve encountered some really great doctors over the past few years that have looked right at me and said “I may be a doctor, but you definitely know your kid better than I do”. I have so much respect for doctors who take the information we as parents give them and then give us the medical advice on what to do next.

      And Part 3 of Hailey’s story contains Dr. M’s fate. 😉

  2. How scary! I feel really angry with Dr. M, too. I’m so glad you found some answers with Hailey. I’ve had experiences with doctors with Sam, too, that have left me wondering where they got their degree.

    • Thanks Christine. I’ve started researching doctors a lot more extensively before I go to them. With this most recent move I was able to research a huge list of neurologists for Skylar. Her last neurologist’s specialty was the ketogenic diet and we never felt like she knew a whole lot about what was going on with Skylar. Our new neurologist specializes not only in Epilepsy, but developmental disorders as well. We were floored by the thoroughness of her exam and the tests and treatments she ordered. I’ve learned that if I get a “not good feeling” about a way that a doctor works, we don’t go back to that doctor.

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