The Hardest Month of my Life (Part 3)

{You can read Part 1 here and Part 2 here}

Before I go on, I want to pause some of the events in this story to share something bittersweet that I was definitely not prepared for in all the craze of this season…that during some of my family’s hardest moments, I got to witness the way my children love each other – and it floored me. In the often-chaotic moments of motherhood, I’ve been known to be hard on myself. Like, literally I’m telling you I can find the sweetest moment and my mom-guilt steps in, trying to convince me that I’m failing in some way. But witnessing the selfless and unconditional love these siblings have for each other has really taught me that something greater is at play here, whether I’ve gotten to the dishes or not on a given day. When Alejandro first came down with his headaches, his little brother (age 7) balled up his fists and said through anger and hot tears, “Oh I wish I could take away his pain!!” He broke my heart asking through those same innocent tears if his brother “was going to die.” I knew then that my children need each other, that they were all truly suffering when one was sick. My daughter (9) wouldn’t leave her brother Alejandro’s side. She stayed in that bedroom with him until he was taken to the hospital and to this day I’ll catch her watching him randomly, solemnly. If questioned, she’ll tell me she’s wondering if he’s “okay.” And every time Alejandro ordered a meal at the hospital, he asked if he could save some for each sibling and wanted to stow away specific foods for each. He knew that each of them loved him and they were all eager to be reunited because they are truly each other’s world.

Back at the hospital, Alejandro was responding favorably to the steroids and feeling a bit of relief. A full MRI was scheduled and we prepared him for what we were told – that it would last about an hour, and he’d be able to watch a show while he laid there. He wouldn’t be allowed to eat or drink until after the exam, and he fasted from the night before. Unfortunately, this was the first of a series of traumatic events that I’ll never forget. The test was postponed after a whole ordeal, and then eventually when it was time to go in, it wound up being almost 2 and a half hours long! All the while I couldn’t be with him. Afterwards, we were told he did amazing and he gave us a thumbs up. He didn’t speak of it right away, but later Alejandro told me that he didn’t like to think about the experience and I realized how much it had affected him. Once he came back, asking for water and intensely thirsty, we were told he needed to wait until the results were read before he could eat and drink. We waited for hours and still nothing. Matt and I asked again and again but the nurses had no answers until the doctors made their rounds. This was torture. My sweet boy was so thirsty and we couldn’t do anything about it in case the results showed a need for further testing. Finally it became so late that the nurse gave him an unauthorized sip of water because not even he could stand to watch as Alejandro cried out in thirst. It wasn’t fair. Finally the neurologist team came late at night and the wait was over. He could eat and drink again.

The same neurologist who admitted Alejandro explained the results to me on the following day. I was so grateful she showed me on the screen exactly what the findings were. There was a significant and dangerous amount of swelling, but it hadn’t worsened from the previous scan.

Still, no tests were showing anything as far as the cause, so they scheduled a spinal tap. My understanding of this procedure is that it’s a scary one, but the doctor assured us that it wouldn’t be painful. That Alejandro would have some meds to ease the experience, and that he just had to sit there, cooperating with the medical team. Alejo was nervous, but again he was assured it wouldn’t be a big deal. HOWEVER, the night before the procedure, a random nurse told him about her experience in detail as a kid getting the spinal tap. “I’m not gonna lie, it hurts. Just make sure you hold someone’s hand…” (?!) Now it became all he could think about and he dreaded it the whole night before, no matter how much we tried to assuage his fears.

The day of the spinal tap, Matt had to go to an appointment, so the baby and I stayed with Alejo. We had just been moved out of the ICU, which was good news! Before they took him in, a blood draw team came in unexpectedly. Already concerned about the spinal tap, Alejo was not prepared for this. He started panicking and refused to let them draw his blood. Now, this team was obviously not good at communicating with children, and they looked at me, expecting me to hold my son down for the draw, which I refused to do. I requested the numbing cream but all they did was to apply a quick spray, which wound up doing nothing for him because they didn’t wait for it to work. He screamed at the top of his lungs and kept his arm away so I called in our new nurse, who was truly one of the best we had during our whole stay. I was bouncing the baby and trying to talk to Alejo but he was absolutely beyond reason. Cheyenne, our nurse, asked if I wanted to leave but I answered that unless I was making the situation worse, I was staying. Nurses came running in and it took a whole team to hold my thrashing strong little fighter down. I couln’t blame him. My poor brave boy is barely 10, and he just couldn’t do this anymore. I’m so worried at this point because, how is he supposed to get a spinal tap done if he can’t even handle a blood draw anymore??!

The draw is finally done and Alejandro won’t stop crying. Cheyenne is visibly shaken and, gulping back tears, she shows me she’s texting the doctors. “This is not gonna happen. This won’t work. He can’t endure the spinal like this. I’m gonna let the doctors know. We have to try it a different way. That’s what I would want if it was my son.” I nodded vigorously, “Okay,” I say shakily. The baby finally lets me put him down and I sit next to Alejo on the bed. He tells me how much it hurt, and I hold him, tears welling in my own eyes as he continues to cry. After that, the floor manager comes because it turns out we caused quite a scene and he checks on us and on me to see if everything’s okay. It’s decided that Alejo be put under complete sedation for the spinal, so he doesn’t have to feel anything. Cheyenne apologizes for overstepping but I assure her I’m grateful, even though there’s one doctor in particular who stays upset with her. After this, Matt refuses the next few blood draws since they aren’t super important and Alejo needs a break.

The day of the spinal, Matt, the baby, and I stay with Alejo until they take him to the procedure. His IV has become painful and burns him each time they put anything through it so the anesthesiologist decides to give him a mask and then start a new line when he’s out so he doesn’t have to go through the trauma anymore. We were so grateful, and Alejandro was happy. Thank God.

Pictured above is my emotional support coffee that got me through waiting for Alejandro’s spinal tap procedure to be over. Those of you who have experienced medical procedures with your children, is there anything more helpless than a mother who watches her child get wheeled into a room where you can’t follow? It’s a cruel thing. But the relief of walking in to find Alejandro’s smile and telling Matt and I in wonder, “I didn’t feel a thing!!” was worth it. Praise God, seriously. Afterwards we learned that the team who handled the spinal tap struggled to find the point of entry and had to try 4 times before they got the exact spot correctly(!!). There was no doubt in my mind that God spared Alejandro the trauma of being awake during this procedure.

As the week progressed, physical, occupational, and speech therapists came to check on Alejo and he slowly improved. He was able to play the Switch and watch his favorite show, Curious George, and his head hurt less as the steroids continued to combat the swelling. It was also such a good feeling to see his appetite improve as my little guy regained his sweet tooth, heartily enjoying designer cupcakes a friend sent him (thank you Ethel!), and ordering cookies regularly with his meals. <3

There were a few difficult moments, as Alejandro’s IV continued to burn with any medication, and the nurses, doctors, and specialists continued to “suit up” whenever they entered his room so as not to expose him or others to any virus, but after every test had been run it was determined that the cerebellitis had come about as a hyper-response to a very common viral infection. Basically, his body fought his cold by causing swelling in his brain and there was no other explanation. Thankfully no other infection, event, or autoimmune issue seemed to be the cause, which is still puzzling to this day. It was determined that Alejo would make a complete recovery and that it should never happen again.

At the one week mark we went home with steroid medication and instructions not to let Alejandro do any activities that could cause him to bump his head. The complete and utter joy and peace of having our family all together again was like nothing else and as cramped as we all were, the kids slept in our bed for several nights after. My sweet Alejandro had had to grow up and even now a few months later, I can see the difference in him. He recovered little by little and regained his strength as we continued to give him his steroids that would eventually cause all the swelling to completely come down until his next MRI (only 30 minutes this time! And they let me stay with him the whole time!) revealed a normal brain scan.

At our follow-up with that first neurologist who saved Alejandro’s life, she showed us a side-by-side of the first scan and the last and, I don’t think Matt or I were properly informed even at this point, to realize the danger our son was in. His whole brain was so inflamed and the pressure and pain it must have caused him is really something painful to imagine. The danger he was in is unthinkable so I’ll leave it at that. Our pediatrician who initially sent us to Children’s Hospital admitted to us later that she was afraid when she saw him that day in June, worried that he had lesions or brain damage, and all I can say is that God is really merciful and He has granted us our son back. A miracle.

I can’t say the trauma is over for us because there have been plenty of moments where Alejo will have a lingering headache (especially as we weaned off the steroids) and a familiar sense of panic will hit me in the pit of my stomach. But thankfully we’ve had no more scares and Alejandro held out hope throughout his weeks of recovery, for the day when he’d be cleared to ride his bike and climb trees again. After his follow-up a few weeks ago, he was officially cleared to resume normal activities, and he went back to his regular little boy activities with renewed vigor. We also finally got to celebrate Alejandro’s birthday properly, which was so important to all of us. Life has taken on a new normal, but we can only be thankful when we look back on all that took place. There’s definitely more healing needed after the trauma, and I know so many of you understand that it’s hard to truly believe everything is going to be okay now, but I am so thankful to be at this point. As Alejo reminded me once a long time ago, the world is our ship, not our home (words from St. Therese of Lisieux), and it helps to remember this when life seems heavy.

Thank you so much, friends, for reading up to here. I’m grateful for every one of your prayers and words of support. Sending hugs to each of you.

Love,