Seizures

I’m writing this update from our hospital room at Children’s, where we’ve been since Friday. Lucas had a rough couple days after being discharged (lots and lots of crying and discomfort) then ended up having a seizure Thursday night. It was extremely scary and lasted about a minute. We immediately called the on-call neuro unit and he told us to wait it out, that seizures were sometimes common after neurosurgery due to irritation of the brain and to bring him to the ER if they continued or if he had one longer than five minutes. Of course, we got little sleep that night, but the apnea monitor was on and his baby monitor was on so high I could literally hear every breath he made in his crib. The night was quiet, but Friday morning he had his second one, and at 5 pm the third one….which sent us down to the ER where we spent all night until he was admitted at 4 am on Saturday am. He had another CT scan to check the shunt and bloodwork checking for any signs of infection. Both came back normal, which is why we were admitted for further testing. We believe he had another short seizure when we got to the ER in the evening and a definite fourth at 4 am when we got upstairs to our room.

The ER was not fun, as we dealt with multiple, new doctors, explaining his history over and over again. I know they need training, but it is so maddening to deal with 24 year old residents, when you’ve “been around the block” so many times with a medically fragile child. Lucas had a rough night, they had a hard time getting blood out of him, he was screaming and crying as the tech struggled. I had to hold him down and was I sobbing as he wailed. I’ve never heard him sound quite that loud and distressed in his cry, I can still hear it when I think of that moment. Call me crazy, but I swear he remembers all those needles in his early days. He starts crying the minute they start messing with his arms. Then, they ordered a lumbar puncture (spinal tap) because they wanted to test for infection of the spinal fluid. They ask parents to leave for this procedure. Although he had many of these in the NICU when he was tiny, to think about them doing it now, is just awful. They basically put the baby in the “shrimp position”, nose to toes and place a needle between the vertebrae to extract fluid. They tried a few times with no success. Then, the final agonizing part was they insisted on starting an IV. They wanted to start one right after the blood draw and I told them no, that they could only start one if we knew it was 100% necessary. Because he had so many sticks in the NICU, his veins are shot… he hasn’t had enough time to grow and regenerate veins, and the ones that are healthy are so tiny it is difficult to hit them, or they blow immediately. He is very, very difficult to get an IV into. They told us when he was sedated last week for the MRI that it took them five tries, and for his surgery, it took them almost an hour to get it in. So against my wishes, they attempted… and failed. They tried four times, while Lucas laid there and screamed. Bran had to be in the room with him alone this time, because I just couldn’t do it. They worked for about an hour, then decided to give up. And, by this time it was already so late that they decided to hold off on giving him medication for the night.

Seizures can occur for these reasons… 1) infection; 2) shunt malfunction; 3) trauma or irritation to the brain; or 4) tendency to seize (meaning he’s just a kid with a condition that seizes under stress). Over the course of Saturday, he had four more seizures. He was hooked up to an EEG for an hour, and the doctor made another dreaded lumbar puncture attempt. This time it was the Attending Neuro Physician with lots of experience, and she could not get any fluid either after two tries. So frustrating! And she was upset too. They really wanted to get fluid because so they could completely rule out any form of meningitis. This was a huge concern since the surgery was just a few days ago, it could be very likely that bacteria was introduced.

They started him on seizure medication Saturday evening and planned to discharge on medication Sunday morning, but three seizures came after his first couple doses of medication. Then on Sunday morning, he seized again—twice within 15 minutes. So we spent Sunday with Lucas hooked up to an EEG the entire day. He got a loading dose (lots of medicine all at once) of Dilantin to stop the seizures right away while the other medicine, Keppra, takes builds in his system. This meant that he had to have an IV… ehhhh! So, he was stuck again, but this time by the *best* critical care IV nurse. She was awesome and got him on the first stick. Of course, I left the room again. She actually remembered us from the NICU, we were so grateful they called in the big guns for this one.

Things got better throughout the day – no more seizures! In total he had twelve from Thursday-Sunday. The doctor decided today that since it had been 48 hours and no other symptoms had creeped up, she felt comfortable saying he was infection-free (fingers still crossed for a few more days). Now, the question is, was it just trauma to the brain from the surgery or does he have a tendency to seize under stress and will be on medication for life? We’re not sure at this point, and everyone has their own theory. We are hoping it was just a one-time thing due to the surgery, but either explanation makes sense (because kids with IVH/brain bleeds have a high risk for seizures). Our neurosurgeon said that it is entirely possible it could be irritation causing them, because one of the cysts beside the ventricle that was just affected already appeared to be getting smaller in the most recent CT scan as compared to Monday (which is a good thing), but it also means that part of the brain has been affected and could be irritated. She also said the cyst is in the particular temporal lobe known inducing seizures. Makes sense to me, but my brain hurts just thinking about all this stuff.

So it is 9:30 pm and we are about to be discharged…what a horrible weekend, and we are completely exhausted. Not only are we not sleeping well in the hospital (alarms going off through the night, tending to Lucas crying, doctors & nurses constantly coming in the room, etc.), but its been draining to take care of a very upset, cranky baby all week, especially while being displaced outside of the comforts of home. I have sang more songs, and cradled and walked with him more in this week to calm him down than ever before. I’ve said a lot of prayers, and at the same time questioned the existence of a God that would inflict so much pain on a helpless infant. Then there’s Bran helping take care of Lucas in addition to taking care of his upset, cranky Mommy! As always, he was our rock during these tough days and keeps everything in check… Lucas has a really great Dad!

Although a long few days, at least he is going home, and so thankful he is not staying for another surgery or round of antibiotics. He’ll be on seizure medication until we follow up with our neurologist and figure out a plan, and we have been prescribed an emergency dose should he begin to have multiple seizures at home. On the good side aside from the seizures, he seems to be getting back to his old self, and much more smiley and happy today (unlike all this week). His left eye is getting better too—still very dilated, but the swelling is starting to go down. And, a very interesting result from the surgery—his left eyeball is sitting normally.