A Scary Time (Hailey’s Story) Part 3

*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

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