I don’t really want to write this, but I want it written. After recounting the story numerous times to each of the doctors and neurologists who came to see Landon, its re-telling should be second nature.
To give you the background and bring you up to speed, you might want to start with this story where Landon joined the Blue Lips Kids Club during what I thought was an asthma attack. After the first episode, we put him on antibiotics for a double ear infection and increased his asthma medicine while he finished fighting the end of a little cold. He seemed to be completely on the mend, and we spent the next week enjoying a glorious staycation during Chuck’s spring break.
On Friday we made plans to ride the carousel at the zoo and then enjoy the toddler discovery room at the science center. Unfortunately, Friday morning Landon slept over 15 hours and our timeline was set back. When he finally woke, we all went in to greet him and he seemed tired. He wasn’t interested in eating breakfast [which was a red flag], but we’d already told Lucy our plans for the morning and were anxious to press on. We strapped everyone in the van and were backing out of the driveway when I turned to look at Landon. He was slumped down with his chin on his shoulder, his eyes fluttering in recognition when I called his name. I jumped out of the car and ran to unbuckle him. By the time I reached him, his lips and hands were blue and there was an ashen color to his complexion.
We rushed him inside and started another breathing treatment, unsure of what else to do. Unlike his first episode, he allowed us to hold him and calm him during this one. Within a few minutes, his color began to return. The breathing treatment took 15 minutes and he seemed to be fighting sleep through most of it. After the treatment he still seemed sleepy but without discomfort so we once again loaded everyone in the van. We decided to abandon the carousel plan and go straight to the science center. On the way there, I called Landon’s allergist/pulmonologist to let them know about the morning’s events.
When we arrived, everyone seemed thrilled with the toys and exhibits of the toddler room. Landon quickly found some plastic dinosaurs and had a great time making them come to life. My phone rang and it was the allergists’ office calling to get more details about Landon. As I was filling the nurse in, I saw Chuck walking towards me with a limp and blue-lipped Landon. I asked the nurse what to do and she seemed baffled. All she could do was ask over and over, “So it’s happening again right now!? Right this instant!?” I told her I was going to take him to the ER and she agreed. I told her I was going to use his epi-pen and she gave us the go ahead.
We injected him with the epinephrine and he seemed to relax a little. The run through the science center and back to our van seemed impossibly long, the walkways impossibly crowded. Gracefully, in a course of events only God could orchestrate, the science center sits minutes away from one of the best children’s hospitals in the country.
We arrived in the emergency room and were seen pretty soon after. Rather than hearing the news we expected, that he was having acute asthma attacks, the doctors seemed puzzled and brought in more doctors to consult with them. We found out rather quickly that his blood sugar was elevated and his blood work was giving them some concerns. As the doctor was giving Landon a physical exam, he started to seem very tired. She asked me to set him on the table and within moments he closed his eyes and fell asleep. “Is this normal behavior for him?” The doctor asked. I wanted to scream. No! It’s not normal for my twenty month old son to fall asleep sitting up in a strange environment at 10:30 in the morning! It was then, covered with helplessness, that I began to pray. God, please don’t let this be it. Don’t let this be the end. Surround him. Protect him. Heal him.
My concern soon shifted to Lucy. She was with us, behaving wonderfully but asking when we were going to the zoo. Chuck called a friend of ours from church and arranged for her to be picked up from the hospital. I will be eternally grateful for those friends. I could not imagine Lucy seeing or hearing what happened next.
Because the first set of tests gave so many concerns, the doctors came in to collect a urine sample and start an IV to make the blood collection easier. There’s nothing more heartbreaking than holding down your child while strangers insert needles into their little bodies. It took the strength of myself and three nurses to hold Landon down while the nurses did their work. His eyes looked at mine, filled with fear and absent of understanding. Tears streamed down his face, red from the battle he was waging. The nurses finished [God bless nurses] and left us to, once again, wait for results.
I climbed onto the bed and held Landon in my arms. Sleep and relaxation came mercifully quickly and he spent the next few hours resting. A nurse came in and told us we were being admitted and that the doctors had called for more tests, which would require more blood. The doctor followed and explained that yes, they were admitting him, but they couldn’t decide which floor to send him to. She explained to us that they believed he was not having asthma attacks but was more likely having seizures when his lips turned blue. His blood sugar was elevated. His electrolytes were imbalanced. His blood was carrying too much acid. Would they send him to endocrinology to treat his elevated blood sugar levels, neurology to determine if the spells were in fact seizures, or general medicine to treat all of the problems as one?
After the taxing day, we were eventually sent to the neurology floor and settled in for the night. Landon was such a sweetheart. He smiled and waved to all of the nurses and doctors who came into his room. He seemed rather unfazed by the whole process, thankful to have the two-on-one time with Mama and Daddy. He ate a hearty dinner and played with some animal friends Chuck brought him. He tried to explore every inch of the room attached to both a heart monitor and an IV line providing him fluids. His vitals were checked every hour, and sleep did not come easily for any of us. The heart rate monitor and O2 sensor provided an unfortunate soundtrack for the night as they rang out at random. After hours of trying to help Landon sleep in the hospital crib that looked like a rocket ship from the future, I held him in my arms. Snuggling with him and hoping my silent tears fell onto the pillow rather than his sweet smelling head.
Around 2 a.m., we were told the doctors would like to set up an MRI for the morning and Landon wouldn’t be able to eat or drink anything until that was done. At 8 a.m. We met another round of doctors who came in separately to ask us to tell them about the spells and then met in a conference room to discuss the case. The day offered us little more than waiting [and trying to comfort a hungry, sleep-deprived toddler], but at 10 a.m. we were informed that due to the holiday weekend there was no one available to run the tests they were seeking. We would be discharged to wait until the next incident.
So that’s where we stand now: waiting. Waiting for the next time he slumps over and his lips turn blue. Waiting to try to catch that spell on video to show the neurologists. Waiting for an MRI and an EEG that still stand a week and a half away. Sneaking into his room while he sleeps to make sure he’s breathing. Waiting. Praying. Trusting. Waiting.
What struck me as most absurd about this whole situation was the peace brushed on my heart. I truly have a peace that passes all understanding [Phil. 4:7]. I trust that God is in control of this situation [Rom. 8:28]. That He cares for my little family and is watching over us [Josh. 1:9]. I have seen the power of two or more gathering [Matt. 18:20]. I have felt the burden lifted from my shoulders [Ps. 55:22]. It is unexplainable without faith [Heb. 11:6]. It is impossible without a church of believers who know that together we are stronger [Ecc. 4:9-12; 1 Cor. 12:26]. We are not alone in this and because of that: concern I may have, but worry I will not [Matt. 6:33-34].