A Scary Time (Hailey’s Story) Part 4

*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!


Thinking back on all the events of the last 9 years is definitely overwhelming.  When I get frustrated with something that is happening with Hailey, I quickly remind myself all that she has overcome.  A couple of summers ago, Hailey came to me upset because you could see her scar from her g-tube when she wore her swim suit.  Her scar kind of looks like a second belly button and she was definitely self-conscious about it.  I had never really told Hailey “her story” so I shared with her that when I saw that scar, I was reminded how she was our miracle.  I told her that she should be proud of that scar.  I told her that her tube had nourished her and because of that, she was with us today.  I can remember her smile and the feeling of her arms as she hugged me and said “thanks for telling me that mom. I love you.”  I’ve never again heard her mention anything negative about her scar.  She has actually been very open with people that have asked her about it.  I’m proud of her!  I’m proud of what she has overcome and I’m definitely proud of who she has become!

Thank you for following along on Hailey’s journey.  So many people had asked about her struggles and her acute illness was definitely one of the reasons that there was a delay in us progressing with testing and further evaluation regarding Skylar’s developmental delays.  We firmly believe that the Lord’s timing is perfect and that everything happened exactly as it was supposed to.

Blessings!

JuJu

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

  1. After living through this with you and Chris and the girls, I would like to stress one thing- always trust your gut instinct when it comes to your children. I am a nurse and a mom. I’m a strong believer in medicine and alternative choices as well. I am not anti-medicine, but after 16 years in nursing I am here to say that there are some not so great physicians and nurses. It is like every other profession. I’ve been fortunate to work with mostly stellar practitioners but in this case, I don’t know if I could have believed all of this could have happened at the hands of an incompetent and uncaring physician had I not been there.
    The thing that concerned me the most was not that he missed the diagnosis. It was the fact that he cared more about being right than doing what was right. And in the field of medicine/nursing, that pride not only causes the practitioner to fall but for the patient to fail.
    Hailey is a better child and person because of you both as her parents. I’m a proud Aunt Jenny.
    Remember though- your love for Hailey must always be greater than your disgust for Dr. M’s actions. Hold to that and not the bitterness that could ensue if you held onto the other.
    Love you four-J

  2. Thank you for sharing this. I knew some of it, but not all of it. I am truly proud of how you and Chris handled this. In working in schools and in homes with children with significant needs, I get told all the time that I have to have a special level of patience. I always answer the same way: “I am only with the child 40 hours a week… It is the parents who are with the child, working through the hurdles, 24/7. Praise them.”. I am astounded by what amazing parents you two are, and am blessed to know you.
    Love,
    Mark

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