Alleluia Is Our Song

{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,

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}

This story is a hard one to process. This is a space where I mostly share moments of joy (I shared my “why” for this blog here), and while it’s not quite a “mommy blog,” I do share snippets of motherhood once in awhile. Today I’m going to share what was hands-down, the hardest month in my life. It’s a long one, and I feel like it might need a Trigger Warning for some intense moments because it is a break from my usual sunny posts I share here. Here it goes…

The above picture was a story I shared on Instagram, asking for prayers for my oldest, Alejandro, on June 4. The day before, I found him crying in his bed with some intense headaches and sensitivity to light. He uses glasses so we were used to some on/off headaches but this was completely different. We turned off all the lights for him that evening, kept vigil with him, and let him sleep in our bed that night after a quick convo with the nurse line. I was advised that if he should become dizzy or start vomiting, to take him in to the ER. The next morning, he woke up and immediately began to throw up. I called the nurse again, and prepared to take him 6 minutes away to our hospital. I was also concerned because I had a nursing 10 month-old who relied on me, but my husband Matt couldn’t take my place – you see, he’d been experiencing some concerning symptoms along with extreme weakness/dizziness, and faster-than-normal weight loss. He was convinced it was a side effect of his blood pressure med, so he was advised by his doctor to wean off of it and he was waiting to feel better. So I left with Alejandro and we spent some hours at the ER, where they gave him some anti-nausea meds and a combo of pain meds which seemed to help calm things down. The doctor seemed unconcerned and was ready to send us home. “Are you sure?” I asked. “I have 6 kids and I’ve never seen this before.” “No offense, but since you have 6 kids, it could be he’s asking for attention,” the doctor replied.

My cheeks burned with humiliation but I also wanted to not get upset when I needed this doctor’s help. “Really?” I said. “I found him crying ALONE in his bed. He wasn’t asking for attention. And vomiting? Vomiting repeatedly for attention?” He shrugged. I asked about a CT scan but the doctor impressed upon me that he didn’t see any signs of a head injury, and exposing him to the scan could be unnecessarily dangerous (increased cancer risk). After calling my sister (a new resident doctor herself) for her opinion, I asked for at least some blood tests and he agreed, however nothing was found and we went home. I shared this message on IG that night:

The next day (Monday), things seemed improved but by the afternoon Alejandro couldn’t stop vomiting. It became constant and I called my mom crying to ask for prayers. Back to the ER. I take a wrong turn as he continues to vomit beside me in the van. We finally make it to the entrance and I leave him to grab a wheelchair since I can’t carry him because he’s 4’10 (tall for his age). They let me park my van right at the entrance and I wheel him in, where he continues to vomit. I’m praying that they’ll let us in ahead of the other adults sitting patiently in the waiting room and I feel so angry that we’re going through this. I blurt out a prayer in my mind to the baby that I lost “Christopher, please. You get your brother admitted.” Immediately a nurse comes out and tells us they can take us ahead of the other patients because he looks so bad. Everyone, including the doctor who walks in (different one from the night before, thank goodness) looks gravely at Alejandro and the attending tells them to give us a triage room immediately because Alejandro looks so much worse than the day before. Our new doctor orders a head CT scan immediately, and they set up an iv line with meds. As they wheel him to the scan, Alejandro looks so drawn and still on the bed with his eyes closed, resting. Something in me knows that this is different and serious. I try to calm down the imaginary flash in my mind where I see a future that I don’t want. The guttural feeling in the pit of my stomach where I can’t stop the screams. I’m not a superstitious person, but I put it out of my mind and refuse to think about it, as if imagining it could make it so.

My dad arrives to sit with us in triage. Alejandro is smiling and talking again, giving us all kinds of animal and bug facts that he’s been researching at home (the meds are working). The CT scan comes back normal and we’re told the only thing that the blood tests show is a common virus. We get ready to leave, when Alejandro asks for a wheelchair because he said he doesn’t feel well when he walks. Our doctor doesn’t like this so he gives some juice and has him walk around a bit. At this point it’s so late into the night, and we’re all tired + ready to go home and recover. Alejo walks for the doctor and we leave. My dad picks up some more Zofran and pain medicine that was prescribed and we head home. So that’s that, we think…

We schedule some follow-up appointments and Alejandro seems better, walking around some more, although there is something off about him – I can’t quite put my finger on it, but he seems a little more distracted than usual and just not quite back to himself. We thank God he is able to keep some food down and he goes a few days without meds.

The next week is a blur – Alejandro spends more time resting than we’re used to. He takes breaks from playing and seems overall down. We try to get him up and consider that maybe he’s traumatized? Depressed? And then Matt’s health starts to take a turn. He’s not able to leave his bed hardly at all, and his vision has become blurry. I take over with the kids, I do the shopping, and honestly don’t have much time between all the solo parenting work to consider what’s going on with him, but I start realizing that something must be wrong. The thing is, we’re no strangers to stuff happening with Matt. He has PTSD, with a nervous breakdown happening a couple of years ago – so he has difficult moments already. He’d been trying to work on his health more this past year so Matt’s been getting regular check-ups, monitoring his heart and blood levels. But I start wondering if maybe he has diabetes. My grandmother had it and I’m vaguely familiar with the signs. The fatigue, the constant raging thirst/intensely dry mouth, vision changes, etc. I ask Matt to get his blood checked since the doctor has one ordered for his physical in a few months. It would be early, but then we can find out if there’s something there. As the days progress and he hasn’t gotten it done, I see his health decline. I look up “how long can a diabetic last without insulin?” and read with panic at what can happen if a diabetic goes untreated. He orders a cheap blood sugar monitor from Amazon and it reads 83 but I’m not convinced. I don’t like to put my foot down, but I decide that I get to pull my wife card now. “Your body is shutting down, Matt. You are going to do this for me. You’re going to get your blood drawn tomorrow.” So he did. And we waited anxiously for the results, which took an extra day. The results finally come on Thursday morning, the 15th of June. For reference, a normal fasting blood sugar is 99 or lower. Matt’s was well over 400.

I called my parents to come watch the kids so I could take Matt to the ER where they admitted him for diabetic ketoacidosis. As you can imagine, this was extremely scary. Matt had these symptoms for weeks before we had a diagnosis and people don’t often make it that long without serious complications or worse. My parents came each day so I could go back and forth from the hospital and still be with my kids and the baby in the mornings & night. It was all very overwhelming, learning what Matt’s new normal would be like living with diabetic meds, insulin, and a new diet. I shared this video on IG that night.

Matt was a model patient, and was determined that with this new chance he’d been given, he was going to work hard and we were going to be okay. I wanted to feel this too, but I had this nagging thought pulling at me while visiting Matt at the hospital. My dad told me over the phone he thought maybe Alejandro was depressed because he wasn’t himself and wanted to lie down a lot. I had even tried baking with him the night before, which he loves to do, but he had to take breaks and his head was still hurting.

The morning Matt was discharged (June 17), I woke up early and prepared to pick him up. The kids were asleep in my bed. I was running around changing diapers and getting the house ready for my parents to come, when I heard it again. Alejandro was vomiting uncontrollably.

To be continued…

{Part 2}