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Rogue Zebra Pt. 2

We got to the Norton’s Children’s Hospital ER and I realized that the calmness I once felt was now moving into the “they are paying a whole lot of attention to us” moment and “oh crap.”  Nurses were moving quickly.  We were seeing attendings and not interns or residents.  My mama gut was screaming, but my outer shell was trying to convince my inner shell that things were okay and they were just overly attentive.

Without much of a blink, I had the ER attending, the neuro attending, the peds attending and there was one other one, but I cannot think of who that person was.  They got him in a gown, I blinked, and the next thing I knew they were putting in an IV, drawing viles upon viles of blood, testing his urine.  It all happened so fast.

When I talked to the attendings, I had explained that we had just been to Vandy and what they had said.  I told them that I may be overly cautious but it seemed Hunter was getting worse…I told them I was looking to have two doctors, two different hospitals, two different states telling me the same thing and then I would be good to go…I had no intention of staying.

I am not the type of mama that is always at the hospital or doctors office for every single snot rocket, complaint, bent finger or toe…or even blood gushing.  I just do not subscribe to that in my life.  If mama is calm…kid is calm….then things can get done and assessed.  I told these people that.  I apologized for even taking their time because I was *sure* that everyone was going to agree.

They didn’t agree.

Not even in the slightest.

Over the course of about 6 days….my, previously healthy, 3 year old was poked, prodded, sedated, infused…..I was alone (Big Daddy was home with the other kiddoes), with a 3 year old, surrounded by a bunch of doctors, residents, interns, students, and nurses.  There was not one person who would give me a straight answer.  One of doctors, I finally cornered and I told her that I’m a nice person.  I tolerate a lot.  I am also a forthright person and I do not beat around the bush.  The one thing that can get a bee up my drawers is when people are evasive or dancing around things for me.  I understand that they do not have all the test results in.  I understand that they do not know, for certain, what this is.  What they do know is what tests they are running and why they are running them and what they are ruling out.  That is the stuff I want to know.  I will not lose my cool.  I will not panic, faint, cry, or scream.  I want to be a student of whatever is going on.

One sweet little student doctor, who looked like the age of my son….he stepped out of his box.  He got down on Hunter’s level.  He played with him, connected with him, and he was genuinely concerned about him and about me.  He would stop by and ask random questions because he was going home and researching.  He, out of his graciousness, made me a list of all the tests that were done.  Which tests were pending and which had results (and he gave me the results).  He also took the extra time to write down what disease each test was for and what was ruled out and what they were looking for.  That list became gold to me.  Every time a nurse came in, she would check to see if a specific result had come in.  This is what I needed.  This calmed my soul and I felt a little bit empowered and in the loop, so to speak.

There was another doctor…she is a pediatrician and was the hospitalist for the week.  She slammed me between the eyes.  She said that he would not get better.  She was guessing it was an autoimmune disease that they could not pin down, but that the fact that every single day, for that first chunk of time, he was getting worse and much weaker, that I needed to see the gravity of the situation.  I need to make adjustments, at home.  I needed to set up therapy.  They really wanted him in Frazier Rehab for an indefinite amount of time.  I was going to be the one who had to feed him, we had to get him fitted for a wheelchair.  This was our life and I needed to prepare myself for that.

I believe after that conversation was the first time I truly had a meltdown.  I did not do so in front of all the doctors…I waited till they left.  I got my son watching a movie, I stepped into the bathroom.  I called my sister, Hunter’s grandma, and I lost my composure.  I could hear Hunter in the other room sweetly saying “mama don’t cry.  Come out of the bathroom and don’t cry.”  I came out….washed my face….and we watched Cars for the thousandth time.  I purposed not to let this whatever dictate his life or mine.  Adjustments…fine.  I can do that.  Therapy?  Fine….I can do that.  When the doctors came to do rounds again…there were about 12….they were timid around me.  They would not look me in the eye.  I guess they thought I was going breakdown.  I told them that I had a moment…my moment was over.  I told them that even in times like this, I choose joy and according to God, this would not defeat us…this was just a part of our story.   I explained that these doctors will see something similar to this, in their future.  That when they do…they will remember Hunter and they will know what tests to run and what to look for and in that God will be glorified.  The tone in the room changed….they began to tell me they were praying for us and encouraging me saying that God can still do miracles.

Next we meet our Neurologist team………..the rogue zebra is in their sites and they are ready to corral him….in Pt 3 🙂

 

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