Wednesday, March 13, 2013

Flustered . . .

That is about the only word I can think of to describe the last appointment Isaiah had at Miami Children's Hospital.  Flustered.

On December 21st, Isaiah had an appointment with Neurology, where much was discussed and labs were decided upon.  So, labs were drawn and we went home.  I expected not to get an explanation for all of Isaiah's unexplained symptoms at that appointment until labs were back.  The labs were mostly genetic work-ups along with organic labs - most were labs that would take about 6 weeks to get back.  Well, December 26th, we got a call saying that some of the labs were back and they were elevated and that we were being transferred from Neurology to Neurogenetics.  No explanation was given, just that we needed to be seen by Neurogenetics in the Brain Institute. I wondered what all of this was about, but I tried not to worry - I was hopeful that we may get an answer as to what may be affecting Isaiah.

This brings me to now . . . February 27th.  Going into this appointment, I have to admit, I was a bit anxious.  I prayed A LOT.  I wasn't worried about God bringing us through this, I was worried about hearing the results of the labs.  Just hearing the words and a diagnosis that may or may not have a cure or treatments.  Words that may or may not bring understanding to the puzzle of my little boy.

Well, we were called back and began going through a detailed history with a nurse practitioner, who was very thorough and polite.  After the history was taken (which, by the way, took about 30 minutes - it was that detailed), she quickly glanced at the labs and said that everything was fine.  Wait, what?!?  Not that I wasn't happy, but what about the elevated labs that sent us to them in the first place?  Oh, wait, she looked over them.  :0}  So, it turns out Isaiah's pyruvic acid and his lactic acid are elevated.  What does that mean? That's partially what left me flustered.

After that, she proceeded to try and find Isaiah's reflexes . . . :0)  Notice, I said, "try".  If you have followed my blog for a while, you might recall previous trips to the neurologist where we found out that Isaiah's reflexes were pretty much non-existent. She tried for quite some time, saying that if they were to be found, she would find them.  Isaiah entertained her by smirking and kicking exaggeratedly a few seconds after she tapped his knee.  She didn't notice and proclaimed, "There it is, I knew I could find it!"  I didn't have the heart to tell her that after all that tapping, he had done it on purpose - didn't want to burst her bubble.  :0)  Anyway, she continued to try and find other reflexes and then just finally gave up to go and get the doctor.

When she came back, she chatted with us a little while we waited for the doctor.  A few minutes later, two doctors came in and introduced themselves.  The nurse practitioner went over all of the history with them and two other doctors entered and introduced themselves - this time, one was the doctor we had made the appointment with - the head of the Brain Institute (so, we went from an appointment with the head of Neurology to the head of the Brain Institute).  :0} So, that makes one head of the department, one resident, two med students, and a nurse practitioner with the three of us (my mom went with me - I am not a fan of Miami) crammed in that tiny room trying to figure out the mystery that is Isaiah.

They quickly went to work, checking Isaiah's reflexes, trying to tickle his feet and check test out his neuropathy, asking him questions (always interesting because he doesn't always give an appropriate response), :0) and just examining his physical characteristics.  They chatted quietly amongst themselves, pausing only to ask us questions every once in a while and to tell us that we should probably see a cardiologist for the heart concerns.  They discussed labs already done, tests already completed, symptoms, and family history, then decided on testing.  What I could gather from the conversations were that more labs needed to be done and that they wanted another EEG.  Then, they turned to us and said that they wanted to admit him for 72 hours sometime soon (initially this Monday, but I convinced them that later is better, sooo March 18th) so that they could do a video EEG - a in-depth EEG to look for seizures and other abnormal brain activity.  The admission will also allow them to do labs that they wouldn't be able to do otherwise.  I heard terms like "mitochondrial" and B12 and all sorts of other foreign terms.

That was it.  That was the appointment.  Three and a half hours later and they never turned to us and say, "we'd like to do testing for this or that."  Only discussion amongst themselves and "we're doing this, see you soon," and out the door they went.  The nurse practitioner stayed behind to take us to scheduling and that was it.

I left more confused and with more questions than before I went in there.  What in the world just happened? What's going on with my child?  If you don't know what it is, what do you suspect it may be?  Why all the testing and what is it for?  Are they just to rule out things or are they to prove an idea?  I guess I will have to wait and prepare ourselves for this 72 hour admission beginning on March 18th (which is no small feat with my active child).  :0}

I don't mean to sound so negative about the appointment - I know they are trying to answer the same questions that I have. It was just that chaotic and confusing. Let me rephrase that: I think the head of the department was trying to teach the others and it appeared to be chaotic & confusing to us. :0)

After Miami, St. Petersburg is a breath of fresh air. The next day, Isaiah had a routine appointment with the AIR Clinic (yes, we traveled across the state - two appointments in two days . . . in separate cities, at separate hospitals).  Isaiah's doctor is trying to change up his meds to make sure he doesn't get used to anything and to make sure that the meds are still working for him.  When I mentioned all of the info. we gleaned from the Miami appointment to his allergist, she agreed that testing for a mitochondrial disease makes sense and that he fits the description.  She gave as much encouragement as she could and said that MCH was the best place for Isaiah to be for neurology/neurogenetics - they are world-renowned and one of the top pediatric neurology specialists in the country (she had already done some homework on this before our arrival).

All in all, we're left without answers right now.  I'm not 100% okay with that, but I know that the answer is coming . . . it may not be a comfortable place for us, but everything is going to be okay.  God never guaranteed our comfort, he guaranteed He would be there and that He would provide comfort, peace, hope, joy, guidance - the list goes on.  I have no doubt that in this season or chapter in our life, whatever you want to call it, I know that God will guide us through this.  I know that God has a plan for Isaiah and for this . . . whatever it is.  My uneasiness isn't in my faith in Him - I know He has answers and solutions.  I know He won't leave us to walk this path alone.  This is new for us, but He has already been there - I am so thankful that He holds us in His hands.

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