Journal #5 - A Sad and Scary Day

It all started last night around 10pm.  We started hearing some grunting and sniffling out of the babies' room and we actually assumed it was Grace with her uber-stuffy nose trying desperately to suck on a binky and still breathe out of her mouth. A pretty impressive feat, I must add.

About an hour after the initial grunting started, we heard a couple of cries so Ben went in and thought he'd be replacing a binky for Grace but found her fast asleep and Caleb making some weird noises. So he gave him his blankie and walked out.  About five minutes later, Caleb actually started making some jagged crying sounds so as Ben was walking down the hall to go soothe him, I asked him to feel for a fever.  Sure enough, Ben came immediately out with a concerned look on his face, "He feels pretty hot", and went straight for the thermometer.  I took it into the nursery along with a new diaper and some tylenol and took his temp right away.  103.4.  Out of nowhere. He was completely fine all day except for his coughing spurts.

I had a bad feeling about it and decided I wanted to bring him into bed with us rather than just giving him tylenol and sending him back to bed.  I picked him up after attempting to dose him some tylenol that ended up mostly dribbled down his cheek and into the fat rolls in his neck.  He was so hot and really squirmy...but also sort of limp.  Ben asked when we should be worried about a fever, was 103.4 too high? I told him I was thinking about googling it because honestly at this age I wasn't sure.

As Ben googled, I looked on, holding Caleb and watcing him attempt at times to look up at me groggily.  Ben scrolled down a web page reading off that 103 can be the cut off for calling the doc at this age, but might be ok as long as it's responsive to fever reducing meds.  We were about to let it sit for a bit to see what happens when I noticed "Febrile Seizure" right below what he was just reading. With the episode last weekend during a mild fever, I wanted him to read off what that said. 

Literally the moment that Ben was reading off some of the scary signs of febrile seizure that sounded very dissimilar to his episode last weekend, Caleb started spasming, but differently than before.  All of a sudden, his head jerked back and to the right and his right arm started twitching.  He seemed completely unresponsive and his head pulled back further and further like he was being ripped from my arms.  Then he jerked back up and then almost immediately flew back and to the right again.  I watched him do it twice and then said "He's doing it right now" as Ben finished reading those scary seizure symptoms from the web page.  He looked at me and asked "What?" like I was making a joke and then looked at Caleb incredibly confused.  I'm sure he was wondering why the little man was trying to pull himself out of my arms like that until he recognized what I was saying- he was seizing right now, this very instant.

We watched him continue like this for several more seconds- it's hard to say how long it went on, maybe a minute?  After the fourth jerk backwards with the continued twitching in his right hand I made the executive decision that we were heading immediately to the ER.  I handed Caleb to Ben and called the pediatrician on my way to change out of my pj's. 

There wasn't much confusion in my voice this time as I reviewed what happened and what my plan was with the doctor.  She agreed and sounded worried, really worried.  She told me that I should be prepared to be admitted and to possibly have a spinal tap performed on my baby boy as well as an MRI.



The rest of the story is still unfolding, unfortunately.  The pediatrician was right, the little dude had a spinal tap at 3am last night in the Emergency Room after undergoing over an hour of failed attempts at blood draws, IVs, and catheters.  They finally got a vein and were able to get some blood but couldn't get an IV in.  Then they finally got some urine through the catheter but it spilled out and they had to re-cath him.  Then the doctor found out that no IV was placed and we started all over again with the hunt for a vein and another three failed pokes finally gave us an IV in his little right hand.  He was poked 7 times, not including the lumbar puncture. He's bruised and incredibly jumpy now.

We had an MRI done this afternoon which meant the little guy had to go under.  It was a very hard hour and a half that I never want to experience again.  I sat in a little section of the giant hospital waiting room wondering if they would have to give him a breathing tube, wondering why an MRI was taking so long, wondering if I was even in the right place- would they know where to find me? Would I be there when he woke up?

I ended up being called after they had to do a second scan due to some movement in the first but they didn't bring me back until he was already awake, confused, and completely angry. I rocked him and sang him into a tearful, exhausted, and defeated sleep for what felt like the fiftieth time in 24 hours.

We found out that his white blood cell count is extremely high, 25,000.  His spinal tap came back with some white blood cells but nothing to write home about.  His first blood culture came back positive for bacterial infection and he's on two separate courses of IV antibiotics now along with around the clock tylenol and motrin when needed to avoid any fever.  He hasn't had a fever since we first got to the ER and it spiked to 104.  He also hasn't presented anymore seizures since his fever came down.

At this point, we have an EEG scheduled for tomorrow and a consult with the neurologist on Saturday morning.  He's seeing a speech and feeding specialist tomorrow.  They're evaluating for delays, epilepsy, anything that could cause staring spells and seizure outside of the infection he has going on right now.  The way the seizure presented, more focused on one side, seems to be a cause for concern outside of a traditional febrile seizure.  They are worried it's more than that, now. Thus, all of the tests.

I'm glad we're being so cautious; I'm not taking my baby home from that hospital with just another diagnosis of "upper respiratory virus" and instructions to lift his crib and use a humidifier unless I have solid proof this time.  We've also done a full immunoglobulin work up; they want to know why he's been sick so often in his short 8 months.

Ben has been awesome.  We're both doing what we have to do.  He stayed home with Grace last night and this morning and then took her to daycare in the morning so he could come and be with Caleb as well.  My Mom also drove down in the middle of the night to come be with us during the spinal tap; I reached my breaking point as I tried to prepare myself for what that would look like.  She calmed me down and was a huge help all day today, especially when I needed to get home to finish up some work that had to be done before the weekend while Ben was still at home getting Grace ready.  Nana stayed with Caleb and comforted him the entire time.  

I got about 25 minutes of sleep last night on a gernie with my baby boy in my lap.  So when Ben got to the hospital, I took a few naps in between visits from the nurse and more meds for little man.  Ben went home and picked up Grace from daycare for her visit with our pediatrician at 4:30.  She's apparently fine now, no ear infection anymore.  Then, after the MRI, more blood draw nightmare, and a vomiting episode, I called Ben to come back to the hospital so I could go home and get a little sleep tonight.  He called Daniel to come and hang at the house with Grace while Ben came to the hospital to trade places with me.  It was so, so hard to leave Caleb but I know if I go another night without sleep, I'll end up bed ridden again with some ridiculous illness myself.  Plus, I miss my little girl.

We're very lucky to have so much support.


I'll take Grace in to daycare in the morning and head back to the hospital to be with Caleb for the visit from the speech therapist and the EEG around 8 or 9am. Ben will probably go pick up Grace so she doesn't have to be at daycare all day without her best friend.

We appreciate all of the prayers we know are going out for our little family right now, especially Mr. Caleb.  I have a tendency to think worst case scenario to guard my heart, but I have this inner peace that everything will be ok somehow.  It's a small peace, not exactly resounding right now- but it's in there somewhere, I can feel it.  There's absolutely a reason for that, and it's not by any earthly cause.

I will leave you with the only photo I have today- we didn't get much time to take pictures.  This photo came in from my wonderful baby photographer.  She heard what's going on with Caleb and sent me this shot from our 7 month photo session via email to cheer me up. It so, so did.