The Hardest Month of My Life (Part 2)

Thank you, friends, for following along with me while I recall, recount, and process the events of The Hardest Month of My Life (here’s part 1 if you haven’t read it yet).

Saturday June 17. I pick up Matt from the hospital and Alejandro once again starts vomiting and complaining about his intense headaches so I begin administering the remainder of his Zofran and pain meds. When I brought Matt home, he came to find Alejandro sleeping on the sofa. Looking weak, thin, and pale, Alejandro could barely greet his papa. Believe me when I tell you that this is a kid that jumps up and lives life with excitement and energy. Old Alejandro would’ve jumped up at Matt’s entrance and jumped into his arms. This was so different, and Matt wasn’t prepared to see the change.

I call the pediatrician on her cell and she prescribes a refill of Zofran and makes an appointment to see us on Monday. The meds helped a bit that night and Alejandro was able to eat a little and chat about his favorite topics – bugs, animals, and his current favorite food, frozen yogurt with allll the toppings. We made plans to walk to Yogurtland with him the next day at his request. Matt and I couldn’t help but notice while he was chatting though, that he was repeating himself a lot, and that his words were a little …slurred?

June 18 – Father’s Day. I administer Zofran and pain meds around the clock so Alejo wouldn’t continue to vomit, but he barely walked, and when he did it was visibly unsteady and just off. He wanted to lie down on the grass when we try the park and frozen yogurt was out of the question for him. We visited my parents, where they had a cake prepared to celebrate his birthday a day early. It was a nice visit, and Alejandro did his best but he continued to prefer to lie down and didn’t want to eat. He’s so distracted by his pain and constant nausea that he really doesn’t respond to things he’d normally love and be excited about. I asked my mom on a whim if they could stop by the next day and watch the kids so both Matt and I could take Alejandro to the pediatrician now that Matt was feeling better (thank you insulin) and he could be involved again. She said yes, and I’m so glad she did.

Monday, June 19. Alejandro’s birthday. I accidentally sleep in an extra hour and wake up with a start because I’d forgotten Alejandro’s Zofran dose. He was already throwing up. I gave him his meds and climb into bed with him. He was curled up in the fetal position and I couldn’t believe that this day, 10 years ago, I had given birth to my beautiful boy. I would have given anything to go back, not to be living in this nightmare reality where my firstborn was suffering so intensely. I held him as I did the first day I’d laid eyes on him, putting my hand on his head where he said it hurt. The pain kept moving and I’d put some gentle pressure on the spot, then he’d silently point to the new spot where it would move and I’d put my hand on it. I stayed with him like this for awhile, my heart breaking.

Finally I get up and start cleaning up the mess/chat with my sister who called to wish Alejandro a happy birthday, but then Alejo can no longer keep the meds down. They weren’t even working anymore. He was crying and in pain and didn’t want to be upright. My parents came and went in to see him, pray for him, tell him they loved him. Matt and I took him to the pediatrician, who told us to take him straight to the Children’s Hospital ER. We left immediately, hopeful for answers.

At Children’s Hospital, we were taken aback at how different the care was. I could tell the nurses were especially trained to communicate with kids and explain everything so there were no surprises. Someone even brought Matt and I juice and sandwiches as soon as we got to triage. I wanted to cry. I was starving and so grateful. When they went to put an iv line in, Alejandro started to flip out. He’d been stuck one time too many and even though he’d done so well up to now, he wouldn’t have it anymore. The child life specialist talked with him and they put a numbing cream on his arm. A few different nurses came in and Alejandro was trying to reason his way out of the poke, but they were able to get it in without any pain, thanks to the cream. He giggled in relief and everyone cheered.

The nurse gave him a “migraine cocktail” and explained kindly that the way he is looking after the Zofran is in, they’ll probably send us home. Our pediatrician had ordered an MRI and the nurse said it’s a long process to set up and can take some weeks to get results, etc. “Can’t you do one here? This has been going on so long already,” I pleaded. “Sorry but MRI’s aren’t done in Emergency Departments. We don’t even have the facility to do it down here.” I look at Matt and the nurse walked out to check in with the doctors.

“Send us home?” I repeated to Matt. It felt like a death sentence. This had been going on over 2 weeks already and we were living a nightmare. I was so hopped up on adrenaline every day with our ongoing emergencies, that I wasn’t even drinking coffee anymore. I couldn’t imagine going home like this again.

The nurse comes back in and says they’re going to do what’s called a “quick” MRI, purely because of the fact that the symptoms have been going on for so long. Thank God.

While we’re waiting, a new doctor comes in unexpectedly, and checks Alejandro’s eyes with a light. He explains that you’re supposed to see the optic disc, but if something is off and there’s any swelling in the brain, it would affect the visibility of the optic disc. Strangely enough, he wasn’t able to see it. Matt and I looked at each other and the doctor stood up, said something about the exam being inconclusive until we see the MRI, and walked out. This was our first inkling of what was to come.

I go up with Alejo and they let me stay with him while they complete the quick MRI. Alejo was so still and gave them no trouble whatsoever, which again impressed on me just how different he was from that active little boy I knew. Once we were out, the results came quickly and the nurse came in to tell us the news that they found it – the cause of the last 2+ weeks of Alejandro’s unexplained symptoms. My beautiful boy has cerebellitis: swelling in the part of the brain that controls motor functions and coordination (the cerebellum). I couldn’t believe it. They said they were going to admit him to the hospital, but that it was possible we’d need to be moved to another Children’s Hospital because they were full at the moment. As we sat with and processed the news that our son had SWELLING IN HIS BRAIN, I couldn’t help but feel anger wash over me. All the times we were sent away, not taken seriously, given mere Motrin and Zofran to manage something so serious…

God gave us a guardian angel in the form of a neurologist who took interest in Alejandro and ordered that they let him stay and be admitted upstairs. At that moment we decided that Matt should go home with the kids and I’d stay. I was already pumping and the nurse set me up with a hospital grade pump because I’d gone too long without nursing the baby and was feeling the effects. We were taken to our room, where we’d spend only a few hours before being changed to the ICU. This is where Alejandro’s pain started again with a vengeance and the doctors gave strict instructions to keep his head elevated due to the swelling, which makes him even more uncomfortable because up to now, he’s been trying to manage his pain and nausea by laying flat.

Once at the ICU, a whole team of neurologists are waiting outside of our room (it’s past midnight by now). It turns out this was an interesting study for them and the head of the department was explaining to the team how my precious baby boy was a “classic case” of cerebellitis with the confusion and slurred speech. It also turns out that this was rare and most of the doctors here hadn’t seen a case like this before. This would be a recurring theme – that even though we’re at Stanford Children’s Hospital, my son’s case was rare and everyone was seriously puzzled. Later in one of the sit-in’s when the team of doctors are conferring, I learn that Alejandro was admitted with risk of herniation. To this day, this makes me feel sick.

The night is a rough one with Alejandro’s pain. They don’t give him anything stronger than Tylenol because his stomach is empty and he cries and yells all night. This is hard and painful to remember. I stay in the pull-out, pumping around the clock because I produce so much milk since I tandem-nurse and I’m in a fair amount of discomfort at this point, which pumping really isn’t alleviating. I try to calm him as he continues to yell out for the bed to be brought down, and I decide not to text Matt how the night’s going because we’re just so helpless at this point. Finally in the early hours of the morning the nurse comes in and begins administering steroid medication – which would be the action plan to attack the swelling. This calms his pain and he finally drifts off to sleep, thank God.

Thankfully, the next day we are allowed to bring the baby, so he and Matt spend the rest of the week there with Alejandro and I, while my parents stay home with the other kids. It was crazy, but at the same time I think it cheered Alejo to have his little brother there because he missed his siblings so much. Our days became filled with constant doctor meetings, asking endless questions, and so many tests to figure out what could possibly have caused such an extreme reaction. Each test revealed nothing except for the initial common virus, but it was determined that a spinal tap may be necessary to rule out any other infections.

All through this time as if it’s not chaotic enough, Matt is also trying to manage his newly diagnosed diabetes, along with his anxiety and scary fluctuating vision changes (a reaction that started during his ketoacidosis and continued as his body tried to stabalize). So while I continue to deal with doctor meetings on minimal sleep and a 10 month-old baby on my hip, Matt is religiously counting every carb he puts in his mouth, checking his blood glucose compulsively, and fighting the pharmacy to get his insulin and syringes on schedule. Our nights are almost comical as Matt (6’2), the baby, and I (5’1) curl up somehow on a pull-out that was meant for one person and ironically, it’s not the worst sleep we’ve ever had, or maybe we just don’t notice. We’re grateful for every 1-2 hour stretch of uninterrupted sleep at this point because staying in the ICU means constant interruptions and monitoring. A full MRI and spinal tap are up next, as ordered by the neuro, pediatric, and infectious diseases teams.

{Part 3 is here}