A Weekend in the ER

Dear Elder I,

Hello sweet brother. Thank you for your letter. I would love to write you back a more personal, hand written letter some time. I hope I can make the time to do that this week. I sure do love and appreciate you.

This weekend was a doozy. I’m still recovering emotionally. Atrain was in the ER at Primary Childrens hospital. There’s nothing like a weekend in Primary Childrens to help you realize how fragile life is, how helpless we all really are, and how dependent I need to be upon God.

On Friday our little family went to Spork to spend the night. A friend of the husband’s had passed away and we were planning on attending his funeral; so sad, such a great man. He died from using dirty Heroin. But, we were trying to make the most of the time in Spork with Atrain, so we took him to a little play with Grandpatty and his cousins. “No Dogs Allowed,” was the name of it—it was funny, but not for the reasons the writer intended I’m sure. At least it kept the kids entertained.

Atrain had a good time with the cousins, and we went home and settled in bed like usual. He was so excited to be sleeping at Grandpatty’s with his favorite little people. I love watching him run around with them, reading books with them, trying to exercise his negotiation skills with them, etc. He’s such a huge light in my life. After a few hours of sleep he woke up yelling for me, so I laid down by him. Then I heard him gag, and up came everything he ate for dinner. About fifteen minutes passed and it happened again, then again, and again and again. I sat by him watching him wallow in his misery, feeling so sorry for my little guy. He hates throwing up and I hate watching him. He’ll let the initial upchuck come, then fight the rest, swallowing it back down. When Baby J woke up and needed attention the husband came by Atrain’s side.

By 7am he had thrown up about 15 times. When he saw that it was morning he tried to get up, but couldn’t stand. His eyes were spinning from side to side. He said he was dizzy. He said he was going to fall over. Every time he moved from one position he cried and his eyes kept spinning. We made a call to Dr. Grandpappa and he said to take him into the ER at PCH. Spinning eyes are not a typical flu-like symptom…they usually always mean something worse, especially when your kid has cochlear implants.

Within 15 minutes and after a quick Priesthood blessing, we were on our way to the hospital. The husband and I weren’t saying much. Worrying about our little Atrain kept our minds too busy to think about talking. Occasionally I would ask the husband what he was thinking, hoping that his thoughts were more optimistic than mine—his Cochlears? A tumor? Extra fluid in the brain? Balance issues? Flashbacks to the weeks after his CI surgery…he can’t get an MRI, what if the ER docs need to do an MRI? What if they have to remove his internal devices just to figure out what’s going on? I kept praying and hoping that he was just dehydrated, which made him dizzy. But I knew that probably wasn’t the case.

When we pulled into the ER instead of home Atrain started crying, “I don’t want the doctors. I want to go home and watch Peter Pan. Home! I want to go home,” he said. “I know Atrain, so do I,” I said, “but the doctors will help you feel better.” We signed all of the paper work and waited for them to call us back. The husband was looking up everything he could about nystagmus—spinning eyes. Jdog slept in his car seat. Atrain kept his eyes closed as he laid on my chest and clung his little arms around my neck. As I wrapped my arms around his long, skinny body I tried to divert my mind from its destructive thoughts. But it kept pushing my imagination right over the deep end. I wouldn’t know what to do without this little man in my life.

They finally took us back and Atrain was brave as they examined him. The ER doc didn’t have many answers. The Neurologist didn’t have many answers, but helped us rule out some of the scarier tumor scenarios. The ENT doc had a few guesses that weren’t all that comforting. We called all the specialists and friends we knew to get more input. Nothing. The docs decided to do an IV to get some fluid into him. He protested when I told him, but when the nurses came in to place it he didn’t even make a peep. They wrapped his IV arm in a little splint to keep it in place. Once they were gone he examined his hand and concluded that it was broken. Then he said, “I was so brave.” That tipped me over the edge. As I bounced baby J down the halls my breath shuttered as I cried and plead with God to help him be OK. I was trying not to let my fears overwhelm me. I was trying to hold onto my hope and my faith, but I needed help. I thought of the father of the child in Mark 9 who said to Christ, “Lord, I believe, help thou my unbelief.”

After a few hours the ER doc came in our room with a possible explanation. He had pulled a research study done by a few docs at PCH. The study discussed the episodic occurrence of vertigo among individuals with Large Vestibular Aqueducts. LVA is the congenital defect that causes Atrain’s deafness, the reason why he has CIs. Apparently 48% of kids with LVA experience random episodes of vertigo—the “room is spinning” sensation that can happen to people in old age. I guess the Vestibular system controls your balance and when it’s a little large, sometimes your world can start spinning.

We didn’t expect this. No one had ever warned us about the possibility of random vertigo episodes associated with LVA. I guess that LVA is such a unique condition, and episodic vertigo only happens to a portion of the tiny LVA population—so it’s not well known or well researched. We don’t know what can trigger it. We don’t know how often it may occur. We’re not even 100% sure that this is what happened, but it was the most likely explanation.

Atrain kept the IV fluids down and they moved us to the overnight watch unit. When we got there he asked for dinosaurs. The dinosaurs came. He asked for Peter Pan. Peter Pan followed. He asked for chocolate milk. They started him on popsicles, which made him and us happier than we had been all day. He loved them. I loved the root beer slushy and jello that he didn’t eat. He began opening his eyes more, and could now lie on his back. He kept his head glued to the pillow, but it was progress. Soon enough he started to lift off of the pillow to tell us, “It’s my sick day today,” and “My broken arm is taking a big drink,” and “I’m not so dizzy any more.” Every time he spoke the husband and I smiled brightly, then exchanged relieved glances.

Night soon came and Atrain was keeping down the pizza, crackers, water and popsicles he dined on to his delight. Jdog needed a better place to sleep. The husband and I agreed that it was better that I take poor J home, away from the RSV floating around in the hospital. Hopefully he hadn’t already caught it. I was torn, especially when Atrain cried as I left, but I knew that the husband was the best company he could have. When I got back to our apartment I opened the door and saw all of Atrain’s toys, the unfinished plate of his food on the table, and his shoes lying next to the cubbies. I lost all composure. After putting baby J to bed I got into the shower and sobbed. The thought and fear of not having little Atrain in my home shook me.

I know that everything I have is from God. I know that it all can disappear in a moment—not because God is cruel, but because that’s just life. Even though God can, I don’t think He takes what He has given away from us. Loss and suffering and sickness and sin are just part of the world we live in. But that doesn’t mean that I should stop trying to rise above it all, to hope for something better. That’s why I believe in God—“whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men…” (our scripture, Ether 12:4). As I stood there sobbing and praying that my son would be alright, I simultaneously knew that sometimes some things aren’t alright and it’s not God’s fault. But in the chaos and calamity I also know that He has the power to save and to heal.

I couldn’t wait to get back to my boys at the hospital. When I went in the room they were snuggled by each other on the bed, sleeping. Atrain quickly awoke and asked for a snack. Good thing I had brought him some “sugar toast” from home. He sat up and snarfed it and I knew he was going to be fine. Soon enough he tried out his legs and exclaimed, “I can walk, look, I can walk,” although his balance was still visibly impaired, he was walking. We went home a few hours later. He is a miracle.

We still don’t know what to expect from here. It was a huge wake-up call that the condition that caused his deafness also has other miserable surprises lurking in Atrain’s future. But, we will keep going with a better perspective on what He faces, and also a better understanding of how much we really don’t understand. Such is life, right? I’m thankful he is well, hoping his improvement will continue and recommitted to praying more sincerely, with the certainty that life is uncertain and all I can really do is fasten my hope to God.

I better be on my way, brother. The kids will be waking soon and it is another day with many more unknowns waiting for me. I sure do love you. I’m so thankful for your service, your perspective and example. Keep up the good work.

Love, MJ

Ps-looks like the husband will be in Texas for two months this summer. He’ll be at MD Anderson Cancer Center doing research with the awesome docs there. It will be hard, but also an amazing opportunity to help him match at a good residency program in Radiation Oncology. Many things happening these days….hopefully I can write you more about the other humdrums of life soon. Love you.