Mateo’s Seizure Story: Part 2

The first part of our story left off on Monday, in the early evening.

Although we did not meet with the pediatric neurologist, we did talk to him on the phone.  We had only had the EEG going for a couple hours, but the neurologist confirmed that what we were seeing was indeed seizure activity.

That meant I wasn’t crazy, fortunately.  Unfortunately, it meant that Mateo was having seizures.  Ugh.

We were scheduled for many tests on Tuesday:  an MRI, an echocardiogram, a chest x-ray, and additional labwork.  The goal was to figure out the cause of the seizures, though the neurologist told us that often times they are unable to pin down a cause.

He wanted to start on an anti-seizure medication immediately.

The summary of my past anti-seizure medication experience was “seizure meds are the worst.”  It takes forever to find the right dose, sometimes they get layered on top of each other and you can even tell what’s working or not working, and it takes forever to wean off of them.

I didn’t want to do any research.  With everything Cee has gone through, I’ve done enough research.  Reading about side effects hasn’t solved any problems.  Because repeated seizures can impact the brain, we didn’t have any other choice but to stop them.  With meds.

 

The only research I did was to leave a message for a friend whose child was taking anti-seizure drugs.  I didn’t have a specific question.  I’m not sure the message was even in complete sentences.  I just needed to talk to someone whose child didn’t burst into flames after starting this new-to-me type of drug.

At 7pm on Monday, Mateo received his first dose of an anti-seizure medication.  The neurologist told us that he would be watching the EEG remotely throughout the night.  If Mateo continued to have seizures, we would increase the dose and potentially add in other medications in order to get them under control.  (That was exactly what I was afraid of!  This stacking up drugs without knowing how much any of them were actually accomplishing!  Grr!)

At about the same time, some initial labwork came back and indicated that Mateo’s calcium levels were low.  It was impossible to know why, but we were told that low blood calcium could cause seizure activity.  We started Mateo on one calcium supplement.

Since David was at the hospital now after having brought our kids to my parents’, I could go to the bathroom without leaving Mateo alone.  In the tiny sinkless bathroom, it occurred to me how much four days had changed things.  Four days ago I was a patient myself, with a team of nurses and patient care people concerned about how I was feeling, how I was healing, how I might need some help.  Now I was trying to be an advocate for my baby on a handful of hours of sleep.

Earlier in the day I told God that I couldn’t handle it.  I told God that it was too much, and I wasn’t going to do it.  Nope.  I absolutely couldn’t handle any more.  So good luck with that.  I wondered how the rest of our hospitalization would go, now that I had committed to quitting.  Now that I had clarified my inability to cope.

I came out of the bathroom and was surprised to see another mom in the room.  We had asked a friend to post our prayer request to our local homeschool group.  One of the moms in our group saw that request and had come to the hospital to visit.

Like a critical illness doula, she sat.  She asked questions.  She listened.  She fetched things.

It wasn’t long after that that the other mom I had left a message for came by as well.

She didn’t have knowledge of the drug we had started Mateo on, but she did have all sorts of online resources to dig through.  She did the research I couldn’t bring myself to do and gave me the highlights.

These women– these women make me tear up remembering.  David and I were not a barrel of laughs at this point.  We’re not even that interesting on a good day.  That day for sure we had nothing clever to say.  I didn’t even smell particularly human.  And yet they came.

These women chose to be a part of the worst day of my life, and for that I will be always grateful.

They left late Monday night after making sure I had a chance to brush my teeth and refill my water bottle.  After listening to whatever random thoughts I needed to verbalize.  After asking clarifying questions to the nurse.  After praying for us when I didn’t have the words to pray.

I didn’t ask God to send me Mother Teresa, but He sort of did anyway.  Two, actually.

I committed to sitting in a chair, holding Mateo all night.  Before the ladies left, they helped prop up my arms with pillows so that even when I relaxed, it was impossible for Mateo to fall off or fall into a crack and suffocate.  And we slept.  On the EEG camera.  Somewhere there is a super exciting video file with me, a rocking chair, and a baby with a gauze bonnet.  If only I had a youtube channel…

Mateo did NOT have another seizure after we started the anti-seizure mediation and the calcium.  In the morning a technician came in to free Mateo from his million cords.  (It was the same technician they called in at midnight when the software went offline.  Poor guy totally came in from having rolled out of bed and put on some jeans.  He managed to re-boot it, so that even though there was a gap in the recording, we didn’t lose the previous data.)

We went through that mile-long list of tests on Tuesday, and we also called a priest friend to baptize Mateo in the hospital.

It was a tough decision.  David felt like doing the emergency baptism was giving in to pessimism.  I felt like having Mateo baptized was one of the only things I *could* do for him.  I was (oddly) tortured by the fact that we didn’t get a family picture on Easter.  We had to drive separately to Mass, David was a lector, we went to brunch afterwards– it was just too hectic.  But I regretted that we might have missed our only opportunity for a family picture.  I didn’t want to regret not having him baptized if we had the chance.  So we did.

We had a nursing student take the picture.  (It’s the same student who was told to scrub all the electrode glue off of Mateo’s head following his EEG.  As she gestured to me to take Mateo and wash his glue-y head, I was struck by how young she was.  “Have you ever held a baby before?” I squeaked out.  She nodded, and nervously I handed Mateo over.  Maybe she was punishing us by taking such a super fuzzy picture?!?!)

Throughout the rest of the day on Tuesday, the results for all the tests came back normal, except for the calcium, which was increasing due to our supplementation even if it wasn’t normal yet.

Ultimately we were sent home on Wednesday afternoon with the doctors confident that fixing the calcium levels would take care of the seizures.  The decision to discharge us happened fairly quickly, without a lot of time for me to take over all the medication.  In the hospital the nurses had been in control of the timing and administering.  I was sent home with a big bag from the pharmacy and a tentative schedule for all of it.

Shell-shocked.  Overwhelmed.  Skeptical. That’s how I would describe how I felt leaving the hospital.

We’re at three weeks post-second-hospital-visit, and so far have remained seizure free.  Now we’re working on tapering the anti-seizure medicine.  We’ll continue on with our round-the-clock calcium schedule (he’s got three calcium/vitamin D supplements we have to keep track of).

Mateo may need calcium supplements his whole life, or he may grow out of it.  We’ll only figure it out down the road.  We’ll meet with the pediatric endocrinologist again in two months to re-check the calcium levels.

I guess that means I’m feeling less skeptical about the diagnosis.  Enough time has passed that the trauma wounds aren’t raw and open anymore.  As far as being overwhelmed– we’ve had a handful of people bring us a meal.  It’s amazing how much not having to plan a meal helps with life.

To those who have taken the call to “feed the hungry” by stopping by with supper– THANK YOU!!!  To those that have kept us in prayer– THANK YOU!!!

(Those works of mercy are probably still the best ways to care for us at this point, for those who have asked if there’s anything we need.  We are also in the market for donor breastmilk, if that’s not too weird to mention.)

So that’s the end of this chapter, though Mateo’s diagnosis will continue to play a part in our story moving forward.

Whew.  If you’ve managed to read down all the way through, you deserve a nap and some chocolate.  It’s quite the saga.  Thanks for reading.  <3