A Slap in The Face

5 posts in 1 month, who am I?

When we got home, Luke's cheeks got more and more red as the day went on. I consulted a few experts (my aunt, my brother and my pedi nurse buddy, bobbi) and the general consensus was call the pedi. So I did, and after apologizing profusely for calling and calling - he said not to worry, but it was either a random skin-sensitivity issue or Fifths Disease (a harmless virus) which is also called "Slapped Cheek Syndrome" He said that while it would be highly coincidental, it was possible, and we should just watch him. But he did put my fears at rest that it was not an allergic reaction to the medicine. So, we went on about our day with our little marionette!


Dear Luke's immune system,
Hang in there, we've been through a lot. Don't crap out on me now.
Thanks,
Luke's Mom

Good news, the next morning we woke up and the cheeks were peach and beautiful. Red was not a good color on Luke. But blue? Blue makes you look tough. For the record, the cabinet door won, but Luke's forehead gave it a run for its money.

Needless to say, we are ready for this week to be over.

Home Again Home Again

So, for all those that are waiting with bated breath - for the conclusion to this saga - it wrapped itself up neatly in the form of a pleasant surprise. So, here goes, you two.

First of all some observations:

When we arrived, Luke was still strapped in his carseat on the stretcher. This picture was taken before we left St. Luke's - the fear had not set in.



Once we drove downtown, he was petrified and there was water pouring out of his eyes, nose and mouth. Our nurse (the same one I later caught sleeping) came to orient us to the unit and introduce herself to Luke. She walks up to Luke, and with a fairly thick accent raises her pointer finger and slowly shakes it at him, saying "don't worry baby, no pokey pokey, no boo-boo, no no no" Of course, Luke promptly bursts into tears. Really? Hey, pediatric nurse, DON'T SHAKE YOUR FINGER AT A TODDLER SAYING NO NO NO. It's bad form.

That next evening they brought Luke's meal tray. The toddler meal was Salisbury steak, box mashed potatoes, canned green beans all swimming in gravy. Really? Hey, nutritional services, MOST TODDLERS DON'T WANT THEIR FOOD SWIMMING IN ANYTHING.


I like teaching hospitals - when I see them from the curb. When I (or one of my children is receiving treatment in them), I am less of a fan. First of all, on TV, the virtual caste system of experienced doctors, medical students & residents is made obvious by both the casting director and wardrobe. The newbies are barely shaving, they always look tired, their white coats are short and wrinkled they can't find their pens and when they do they don't work. They say "um" and "well" a lot, and they are followed around by a crotchety, experienced, well-coiffed "Attending" who is perpetually embarrassing them with the Socratic method of teaching. In the real world, the difference is not so easy to discern. Wednesday morning, anxiously awaiting the ENT's results, in breezed a "doctor" with her own monogrammed scrub cap, a white coat, enough pagers to make me wonder if she was not only a surgeon but a diplomat as well. I surmised that she was probably an over-achieving, top of her class, last year fellow - who runs marathons and advocates for under-represented not-for-profit organizations in her spare time. She was holding papers in her hands and handed them to me with a putt-putt pencil and said circle the items you are interested in and leave it on your door when you are finished. So, I am thinking - what am I circling. Am I going to need to call Billy to have him help me make decisions? Did they decide Luke did need surgery and I am choosing the type of procedure we would like to have performed? (yes , Karen - it's Choose Your Own Adventure, Hospital Edition).
It was a menu, she worked for food services, I was ready to place my child's future in her hands. I chose mac n' cheese, and apple, and whole milk instead. I'm not saying that there should be a dress-code hierarchy, where you can't wear a white coat or a scrub cap but multiple pagers? HOW MANY FOOD EMERGENCIES CAN THERE BE AT ANY GIVEN MOMENT?



Shortly thereafter an extremely tall, dad-ish man came in to our room, dressed in a suit with a clipboard and a bluetooth. Was this the CFO? Not it was the surgeon - he gave us some good news. Luke's abscess was small enough that it did not need to be drained in surgery. (collective sigh of relief). They would stick with aggressive IV antibiotic therapy, as well as some steroids and pain control. Luke was playing basketball at the time, and the surgeon said - "you are not sick enough for my OR." It sounded scripted, and I loved it.


An hour or two later, the intern came in and told us that since Luke's clinical presentation is how they will measure his improvement, they would need to see him be able to completely extend his neck before they send him home. She then examined him and said we should plan on staying, but they would round on us later as a formality.

In came the doctors (and interns and fellows and med students). Luke was playing basketball (shocking, I know) and the attending physician told us they were changing the diagnosis to retropharyngeal phlegmon (gross) which is an overly-clinical term for an abscess that isn't big enough to drain yet, and more or less they just wanted to play with him and see how he was coming along. He explained that the intern had informed him of Luke's status but he just wanted to get a feel for his improvement. So they told Luke to throw the ball up! (a favorite game) At which point, he THREW his head back and launched the ball for the ceiling. The place erupted in clapping, and the attending did a knee lift, double fist pump out of excitement. Luke assumed that this clapping was in adulation if his demonstration, so he immediately began to put on a show. There was some stomping, some running in place, a few shrieks and we were told "the hospital is for sick people - you need to go home" WHO IS DOING THE WRITING FOR THESE PEOPLE - They're amazing.


We called daddy and told him our surprise, we packed up our bags and headed "ei-yah" (outside) for the first time in 3 days. It was beautiful outside. I'm not sure what the weather was like, but the air was the freshest.


We were told to stick with the antibiotics, the steroids and OTC pain control and to follow up with our pedi. In the days since we have been home, Luke has had some of his pain come back - which I am assuming is because we are taking Motrin instead of Toradol, which is like eating PBJ instead of a Santa Fe chicken and Monterrey jack cheese with avocado ranch dressing on foccacia bread. But, none-the-less, we are seeing progress. Giving the antibiotic is like scraping dried mortar of bricks. Luke is not a fan - he can't be blamed, it smells like rotten eggs and settles in the syringe after like 11 seconds.


Thanks to all for the love and support and encouragement. Being surrounded by friends and family who came out of the woodwork without being asked was both comforting and humbling.


A few pictures of the patient!

The Adventure Continues

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.

A Shake Down

So, some of you heard and some of you didn't, but we had a whirlwind morning on Friday. And this post is more for me, to remember how it felt, to remind me how thankful I am, and to show Luke one day just how much he scared us.

Thursday night Luke went to bed with no complaints. He asked for his ducky and his "glo-glo" (glow worm) - ran through the whole gamut of who loved him - a nightly routine that tickles me to death, and then went to sleep, protest-free. I went to work - and called Billy around 11 to check in. Everyone was bed, Billy was only partially conscious, so I went on working knowing that my family was safe and sound. In the morning - I decided not to wait on the clock to clock out - and left work a little early (and am thankful that I did). Billy called my cell around 7 and said (rather frantically) "did you get my text?" So before I even have a chance to reply, the alarm clock in my adrenal gland went off. "Up-and-at-em everyone, let's get this heart racing, let's dry up that mouth - maybe a little sweat on the palms and forehead would be good - and can somebody get to work on the knot in the throat and the sinking feeling in the gut - let' go people there is bad news coming - we need to be ready" And then he said it - "Luke's body is shaking all over and he is really hot"

I'm sure it will surprise those of you who know me well that I didn't start to cry or shriek or panic. I asked him if he was breathing - yes. Did you take his temperature? - no. Is he still shaking? - no. Take his temp and I will be there in 5 minutes. When I got home, I saw sweet Luke laying in his Daddy's lap, not moving, mouth open in a daze. His temp was high - so we gave Tylenol and decided to take him to the ER. Our pedi office wouldn't open for another hour and a half, and I was not willing to wait. Billy put him down on his rug and we went to pack a bag and get everything ready. Billy went back in to sit with him, and he called me in there... and Luke was face down on the rug not moving. We scooped him up and put him straight in the car. Packed or not, time to go.

On the way to the hospital I called a few people. In my mind (as a nurse) I am making guesses about what I think it is and more importantly what diagnostic tests I think they will do. One of which I am sure is a spinal tap. This is not something I am prepared to do on my own and Billy was with Andrew. So I called Bobbi (my pedi nurse friend), to hear her tell me that they won't do one, which she wouldn't tell me. And then I called Kimbo in the off chance that she was off for the day - no luck. While I was on the phone with Kimbo - I kept looking at Luke. Up until this point he was looking out the window with his mouth hanging open barely blinking. Then he started to shake. At this point, I can't decide - is he shivering, or is he shaking - and should I pull over and call 911 or keep driving. I kept driving and the shaking stopped. When I got into the ER and he was a limp rag. Laying on me not making a sound, not sitting up, not lookin around - not being Luke.

In triage they took a rectal temp on him, to which he did not oppose - and this alarmed me greatly. Then the put him down on the bed - and the shaking started again. I looked at the nurse with my pleading, "what's wrong with him" eyes - and the nurse, rather underwhelmed said - "yep, that is a febrile seizure - don't touch him, now we wait" the shaking stopped (for Luke - for me, not so much), and then they put us in a room. He was zoned out again and I learned that the dazed behavior is called a postictal state - and in children can last up to an hour. They dosed sweet Luke with a lot of Motrin - to bring down the high fever and again said - we wait.

After about 45 minutes and a brief examination, Luke began to talk again. And it should be no surprise that he sat up after sleeping on me and said "ball ball ball" - there was a ball toy on the counter! When the doctor came back in - he was rather impressed at Luke's improvement and more importantly, he seemed relieved. We were later discharged with some valium (for Luke) just in case the seizures came back and didn't stop. We were told to stay on top of the motrin and tylenol regimen to keep the fever down, since that is the only thing that will help prevent the seizures. We were warned though, that 30% of kiddos that have febrile seizures will have another within six months.

Thankfully, there is no long term damage from these types of seizures, and they are not indicative of future seizure disorders. A great relief for concerned and exhausted parents. I have posted a link to an information page about febrile seizures for you parents out there - so you can be informed. That night at home, Luke had a really rough night. His temp was barely stable - and incredibly dependent on the timing of the anti-fever meds. He didn't sleep, he didn't want to drink, and was fussy when he had to take his medicine. We didn't care though. He woke up in the morning with neck pain (which I was sure was meningitis) but aside from a little melt down when he has to look up or lay down or turn his head - he is fine now.

So, in the grand scheme of things, this is not a big deal. These happen all the time, the ER people were calm and un-alarmed and they were right, he is back to the same sweet, ball-loving toddler he was on Thursday. I am so thankful for everyone who helped keep me calm and even more grateful for the outcome. I surprised myself, even, with how well I kept it together. That day around noon, though, as I was calling my mother, I turned into the basket-case, I figured I would have been throughout the whole ordeal. I thought of all the parents out there - who are not so lucky or even the parents who have to endure more before they get their happy ending and I cried for them too. They were a hodge-podge of tears - fear, sadness, humility, happiness and relief. But it is over now - and we have some "bat-cat-ball" to play.

Seizure Information

An Overdue Post

Admittedly, it has been too long. I sort of made a promise to my self to at least do one blog a month - bare minimum. Well, there went that idea. So, this posting is going to be a catch-all update, for the four of you out there that read this journal of mine - so here goes!



THANKSGIVING

For a while now, every Thanksgiving, we would pack our bags, and board a questionably safe mini-glider and head off to one of the country's smallest runways. The hills of Tennessee were waiting for us and my brother was glad to see us too! We would crowd him with our cooking, our cleaning (my mother's cleaning) and re-decorating efforts. It was something I spent the better part of October and November looking forward to. Then we added water to our marriage, and poof! an instant family appeared. Suddenly the logistics of 2 boys, 2 pack-n-plays, 2 car seats, 2 novice flyers and one highly anxious mother was almost paralyzing, so we settled for 2nd string Turkey Day right here in Texas. This was our second annual Thomas Thanksgiving in Texas - and it was lovely!

I, however, am not in the business of cataloguing important moments in my family's life - apparently, so I have no photos. (sad)


CHRISTMAS

Hooray! Christmas is my favorite holiday - cliche, I know, but I can't help myself. This year we got the boys a little slide and we are a little embarrassed to say it is still in our living room. Luke was ecstatic about the slide, until he saw that Santa also brought him a ball. A new ball, and not just any new ball, a new RED back (we love red). Ball trumps slide? Maybe not for any other 21 month old but Luke? Yes. He was playing "bat-cat-ball" with the new balls before he even unwrapped them.



Andrew was slightly less impressed with the balls but was pretty taken with sophie - a squeaky giraffe teether that came highly recommended.

The rest of the pictures are not so great - it is more difficult than one might think, with two babies and two parents to take the time to capture moments. We will be better in the future (the pipe dream of the week).