Caleb’s Medical Mystery

Around 4:45am this past Monday Luke and I were woken up by Caleb.  He was struggling to communicate and acting out of sorts.  At first we thought he was not fully awake or having a night terror type episode-he’s had them before though not very frequently.  He was pointing to his mouth and mumbling as if his tongue were numb.  He was obviously upset.  When we gave him water to see if it would help clear his mouth or snap him out of the odd episode he struggled to drink it and seemed to be drooling excessively.  We calmed him down and he began to be able to say a word or two.  When he would try to communicate more it became jibberish and unrecognizable as actual words.  He was showing signs of confusion; walking the wrong way when heading to the restroom, not remembering what he went to the room for, etc.  We tried to check his motor skills and ability to repeat sentences back to us.  The confusion was getting worse as was his ability to communicate.  Throughout this time he was also vomiting every few minutes.  When we realized he was not coming out of the episode and he was steadily getting worse we made the decision to get him to the ER as fast as we could.  His decline seemed to accelerate on the way there.  By the time we arrived he was in and out of consciousness and very agitated when awake.  He was immediately hooked up to monitors and IV’s.  Bloodwork was started and a CT scan done.  He was given a catheter in order to retrieve a urine sample for a tox-screen.  Everything kept coming back normal though it was obvious there was something very wrong.  As a precaution he was started on broad spectrum antibiotics and the doctors ordered a transfer to Seattle Children’s Hospital.  He was transferred by ambulance with lights and sirens blaring.  The entire ride he was monitored and unconscious, his heart rate was very irregular.  Once at Children’s, specialist teams (neurology/infectious disease)were called in and they did their evaluations.  More bloodwork was done and a MRI and lumbar puncture were ordered.  Finally at around 3 he woke up and made eye contact though still quite out of it and agitated.  He would yell ‘no!’ when the medical staff would touch him or try to check vitals-it was encouraging that he was responsive at all!  A few hours later he was able to tell us his head was hurting and that he was thirsty.  Unfortunately since the tests had been ordered he wasn’t allowed anything to eat or drink (he had been receiving IV fluids throughout the day).  The MRI was done by 8pm and the lumbar puncture was done at 11pm.  By 12:30am he had woken from the sedative and was finally allowed food and drink.  Though extremely exhausted, he was alert and able to communicate.  It was by far the scariest day we’ve experienced as parents and the most traumatic day for him.  Before finally going to sleep early Tuesday morning he told me he was afraid of waking up confused again.  It was heartbreaking seeing the fear in his face and knowing we didn’t have any answers yet.
  Thankfully Tuesday morning was greeted by an alert Caleb!  He was a little sore with a slight headache but a healthy appetite and more than a few questions.  The MRI results came back clear but the lumbar puncture not so much.  His spinal fluid had an elevated white blood cell count meaning there had been an infection of some sort present, there was also a higher than normal pressure within the spinal cord.  Unfortunately, due to the antibiotics given previous to the test, the results aren’t always completely accurate.  All the other levels (glucose, protein, etc) were all normal, and remnants of the infection were nowhere to be found.  Quite puzzling to all.  Also puzzling was the rapid onset of symptoms as well as the relatively quick recovery.  After more tests and more inconclusive results all we know is that it was some sort of meningitis.  The problem lies in what kind and what to do about it now.  If we knew it had been viral he would most likely be sent home.  But since none of the tests for likely viruses have been positive there isn’t any certainty.  For bacterial meningitis the treatment is 14 days of IV antibiotics.  This requires a picc line and training for us to be able to administer the meds at home.  Even though the evidence of bacteria isn’t readily being seen this appears to be the safest plan to ensure there isn’t any possibility of bacteria still in the spinal fluid.  
   Caleb is more than ready to be done with hospitals and just wants to be home with his siblings.  He hates the idea of prolonged IV meds but also realizes the only other option would be to stay an unknown amount of time in the hospital under observation without the antibiotics.  The medical team here has done their best to lay out all the information and options.  They are as stumped as we are but have also said that sometimes answers just aren’t clear.
   We are SO blessed at the prayers and support we’ve already received.  Without the help of friends watching the other kids and delivering meals this entire situation would have been even more difficult.
   Caleb and his siblings are very close and hate being apart.  There have been tears shed by every single one of us at multiple times over these past few days.  Thankfully, the kids were all able to spend some time together today and it was so good to see Caleb’s spirit lifted even for a couple hours.   Needless to say he’s scared of the possibility of the picc line.  He’s a brave little guy but this has all been quite a lot for him to take in, especially hearing what happened since he doesn’t remember most of it.  
   We realize that this story could have had a very different ending and we thank God for the way it all played out and the place we are at now.  Ultimately Caleb’s health is returning and that’s all that matters.
  As with all medical emergencies, we were completely unprepared for what this week held.  As Caleb’s case has turned into a bit of a mystery the prolonged hospital stay, ambulance ride, and multiple tests will no doubt be carrying a hefty bill.  At this point we have no idea the final amount as we are still weighing the next steps to take.  If you feel so led to help financially-thank you!
I will be posting updates as decisions are made or if anything changes.