Monday started out like any other day. One baby talking in his bed the other crying. But when I went to get Luke something was different. After his run in on Friday with the esteemed
health care workers of the St. Luke's ER (see febrile seizure posting), he has had a little bit of a stiff neck. And while he played normally, and turned his head side to side - he would not look up (even for a ball ) and he would wince and grab his head or neck - neat. Well, this morning - it was worse. Billy and I decided that just to put our minds at ease, I would take him to the
Pedi. It was also a good idea, in our opinion, as Dr. Wright had not seen Luke since his febrile seizures on Friday - let the good Doctor rule everything out.
So, off I went. Pining away for a confirmation of my suspicions (that it is nothing more than a pulled muscle), I explained to Dr. Wright that I was there to purchase a good nights' sleep. I had hoped my co-pay would buy me an "
everything looks good" or a "let's just watch him for a few days, there is nothing to be worried about here." After an examination all I got was an urging to take him to the ER for further diagnostic testing. Incidentally, the copay was waived - since we were directed to the ER. My guess is this is a consolation in anticipation of the outrageous expenses that were headed our way.
We arrived at the ER and were examined by a Texas Children's ER doc, who wanted to do further testing. His guess was Viral Meningitis - which sounds really scary but is not. It's cousin, Bacterial Meningitis, is the one that people get nervous about -
that's the stuff that ER episodes are made of. So the battery of tests selected for us was CBC,
CRP and
Sed Rate, Lumbar Puncture, and CT scan. For all of my non-nursing, non-doctor friends, that is a bunch of medical
mumbo jumbo for playing the ruling out game. The CBC,
CRP and
Sed Rate (blood work) would show any signs of infection, the lumbar puncture/Spinal Tap or LP would show if there was meningitis present (viral or bacterial) and the CT scan was to rule out any big bad brain issues.
First it was off to the CT - where sweet Luke was placed on a board and his little head was taped into a vice-
ish looking tray. Something that all 22 year
olds love - right? Well, much to
everyone's surprise - Luke was less than pleased with the setup - but all tragedy was averted when there was a little white ball spotted spinning around the CT. Between "ball ball ball" and "rain rain go away" he handled it really well. In marched the ER doc, about 20 minutes after we left CT - results negative. PHEW.
Next was the IV and lab work - an experience that no ball could help. The child-life specialist comes in and gives us a
spiel about "comfort positioning." What a joke. There is nothing comfortable about the position Luke was put in (by Mommy) for the brutality that was conducted in the name of modern medicine. Little did I know the LP was around the corner and that was going to be so much worse. I will spare the details of the LP as many of you reading this are parents and it was rather upsetting, at least for me. They recommended that we step out - but of course I projected my thoughts and feelings onto Luke, and worried that he would feel abandoned or betrayed if I left him to be bent in half and have his back skewered by strangers. In all reality, I think the only thing running through his mind throughout that madness was "
OWWWWWWWW" The fluid that came out of the LP was crystal clear - which looked suspiciously uninfected. It was sent off to the lab with the
blood work - and again we waited.
A short time later, the ER doc came back and and told us that the "
Sed Rate" was 81, which is alarmingly high. The normal value for this maxes out at 10 in children of Luke's age. So, the decision was, if the LP was normal (i.e. not infected) and we ruled out
ever thing else, there was some big bad infection brewing somewhere and we would have to transfer downtown for further diagnostics.
Here is where my instinct is to say that the room was spinning and I was panicking - but really I was just confused and tired. At 4 o'clock the doc walked in, and informed us that the LP was stone cold normal. Which was great and
un-nerving all at the same time. Great because no matter how routine it sounds Viral (or
Aseptic) meningitis is still meningitis.
Un-nerving because after all of those tests we were left with a shoulder shrug and an ambulance ride downtown. We told Luke we were going for a ride in a "big truck" and he was excited. The ride downtown confirmed that I am not interested in doing transport nursing. It felt like we were going 94 miles an hour in a top-heavy chuck wagon. That, in addition to the low ceilings, archaic lap belt and no windows got me about as close as I have ever been to car sick. Luke on the other hand was reciting "big truck" ball ball ball" and "daddy"
intermittently the whole way there. Arrival was a different story - the minute he came out of the ambulance it was like he could smell it. It must have smelled like a building full of scary people who poke and prod you and perform painful procedures on you. He panicked until we got settled in in our room.
It was 11 o'clock and we were seen by the intern (thank you Grey's
Anatomy for teaching me a marginally
accurate understanding of the hospital hierarchy). She said that, contrary to what the ER physician had said out at St. Luke's, they would do an MRI instead of a
bonescan. But after discussing how stable he was, they decided to wait until morning and let him sleep. Well, we did very little of that and made it to morning by the skin of our teeth. Off to MRI.
They came at 7 and down we went on the EPIC journey to imaging. It had to be in a different zip code. I proudly volunteered to carry him, instead of having his crib wheeled down there. After a near hip-replacement, I thought better of my bold plan - but too late we were already there and I was already committed to the trip back.
They sedated him which wasn't a real joy to watch, and then again I found myself waiting. I didn't start to panic until I realized too much time had gone by - and my wheels started to turn. Which is never good for me. I am capable of imagining the most intricate and outrageous possible outcomes in any given situation and can COMPLETELY freak myself out. After I had mentally played out all of the most dramatic scenarios, they came and got me. Luke was beet-red all over his little body. Top to bottom. He was still sedated and had oxygen in his little nose. His mouth was hanging open and he was snoring his fool-head off. They came and told me that he had over-heated during the
procedure (hence the redness and the extra time). I think over-heated is a poor choice of terms. It implies that there is some ominous threshold that should not be crossed and in fact it had been. When really what should have been said was Luke got a little hot and that is why he looks like a chubby 3rd grader who did a fun run in August.
We left MRI and were told that the would have the prelim results momentarily and they would call up and let us know that Luke could eat and drink again. Much to my dismay, our nurse came in (who I am NOT a fan of - caught her sleeping in the hall - really?) and said they do not want him to eat and the Attending was coming to talk to us. Well, I watch my medical dramas enough to know that the
attendings do not have time to come tell patients that their test results were unremarkable, so again the wheels began to turn.
But after a brief period, in she came and said the most beautiful thing. "We found it"
Hooray - a diagnosis! "It is a retro-pharyngeal abscess." Whoa (
record scratch soundbyte). But, she seemed bored by this diagnosis - which gave me great relief. Now we knew the source of the high fever and seizures from Friday and of all Luke's pain - Luke has a bad infection in the space in his neck behind his throat - we are currently waiting for the
ENT specialists to decide whether it needs to be drained. For now, we started IV antibiotics, pain
meds, and
steroids and a we bought ourselves a few more nights in the hospital.
Our biggest challenge is the IV going bad every time we turn around. At this point a
PICC line is sounding really good - we will see. Thanks to all who have prayed for and encouraged us. We are so relieved that we have found the source for Luke's pain and hope for a speedy recovery.