What a year it’s been. It started with a big cloud looming over my head. Our family had just surfaced from a traumatic 2018 November and December when Ellis got hospitalized for abdominal migraine 3x’s in 2 months. Until this time, we’ve never heard of abdominal migraine or knew of its diagnosis.
I didn’t realize the extent of its overwhelming nature until we had been home for a few weeks. Once everything settled, a tsunami of sadness overtook me and the years of care-taking stress just hit the fan.
Great thing is that we’ve only had 1 hospitalization this year. I am so grateful for this. It’s the worst feeling when your child keeps getting sicker and you have no choice but to beeline to the ER and gets admitted. We cope but it’s difficult to account for sudden life disruptions.
You just go, go, go. This year’s hospitalization landed on our vacation to San Diego and on Mother’s Day. When the nurse mentioned mother’s day, Ellis wished me a good mother’s day as I sat in the hospital bed next to her crying my eyes out. I couldn’t believe the situation: Ellis writhing in stomach pain, Elliot acting like he was not sad that Legoland trip may be postponed, and Chris trying to keep us all intact in case we decide to continue with our vacation or go back home.
These various kinds of emotions teach me that parents cry for their children in good and bad times. Difficult as it is, I find it a blessing to have this privilege.
The strangest thing is that in these times I have incomprehensible peace. They make up some of my sweetest memories of bonding with Ellis, spending quality time with Elliot when he visits with Chris in the evening, and tag teaming with Chris. There’s a fluidity that only God can provide to us in these situations.
Thankful for much this year. Good days, bad days, in-between days. In those bad and in-between days, thankful for people who lift up my spirits. These incidents are reminders that God is faithful and works through people to show his love.
The Lord gives strength to his people; the Lord blesses his people with peace. Psalmm 29:11
And thankful for Whole Foods’ holiday packaged meals. Thankful for family, friends, neighbors, community, hospitals, teachers, kind strangers, Starbucks drive-thru, memories made with friends and family. And of course, thankful for God who loves me (when I have a hard time loving myself) despite my flaws, quirks, and silliness.
For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.
Happy Thanksgiving everyone! Wishing you a joyful and gratitude-filled day.
Thank you awesome readers for your encouragement, friendship, and visiting my blog. You readers make my blogging journey rewarding and enjoyable!
It’s been a few days since I’ve been able to update even though Ellis got discharged Saturday night. I had little time to sit down and actually write something that made sense. I was running on fumes and any quiet moment still kept my adrenaline running. Once our family got home, all the tiredness and a dash of crankiness swept over me.
While in the hospital, I had to answer lots of questions and repeat explaining her symptoms to various specialists. Typical questions: What brought her in for the last 2 hospitalizations?; What tests did they do?; Did she throw up again?; How many times?; Does her stomach hurt?; Where does it hurt?; Did she pee?; How many times?; How much?; How much did she drink?; and, What did she eat?
Even though the nurses asked Ellis these questions, she refused to answer or give eye contact. She clammed up immediately pretending that they weren’t there. In the first and second hospitalizations she was reluctantly cooperative, but the multiple lab draws, check-ups, EKG’s, ultrasounds, and x-rays drove her to the limit. She had little control of the situation and felt vulnerable.
Drama went down when asked to change into a hospital gown before her heart catherization. She was used to wearing her own pj’s in the hospital, but for a procedure she needed to change. This brought on a flood of tears and downright refusal to change. She stiffened her body and wouldn’t let me take off her clothes or even put on the gown. Thank you nurses for your patience, kindness, and smiles!!
The first day we went to the emergency room I had my first meal at 5:30 p.m. We stayed in one of the back rooms with Ellis dry heaving and squirming with stomach pains. She was getting intravenous fluids for her dehydration, but the doctors felt uncomfortable managing a healthy amount of fluids in her body: I learned that it’s a fine balance of how much fluid she can retain in relation to her output. All of this can negatively affect her heart function.
The emergency room doctor informed us that Ellis’ “significant and complex medical history” exceeds their hospital capacity. Best care for her requires a transfer to our familiar hospital, Lucile Packard Children’s Hospital via ambulance. At first the diagnosis was UTI, which was getting treated with intravenous antibiotics, so I didn’t know why we had to transfer. I just received a bill from last month’s ride, so naturally I was hesitant at first. I was told UTI was not the main factor and something else could be contributing to her sickness. l was advised that it’s best to rule out the heart as causing her stomach pains.
Back at LCPH and saw familiar faces again. First 2 nights pushed my physical and mental capacity farther than I thought I could handle. Her symptoms remained a big mystery and these symptoms got us readmitted 3 times. Everyone was trying to figure it out: Is it heart related or gastrointestinal? To get to the final diagnosis they had to rule out other causes. This required a heart catheterization, which is an invasive exam that requires anesthesia. She overheard the conversation and after they left the room, she said “Tell me what are they going to do. I’m scared.”
On the third day, her condition started to slowly improve. This was evident with her smiling, talking, going to the bathroom, and saying she’s hungry. Like I mentioned before, she refused to answer questions or look at anyone who came into the room. It was hard to see her this lethargic: I missed her funny laugh, cute talking mannerisms, her running around, raspy voice, and the healthy Ellis I know.
Thankfully, all of these tests showed that her heart is working well! The previous sicknesses too were not related to the heart. This is a huge relief, because her single ventricle circulation is precious and must stay healthy as long as possible before more interventions are necessary.
What made me sad at goodbyes at night was Elliot tearing up and wiping his eyes. His lingering hugs almost made me cry. It’s a matter of who needs me more. I shared this with a close friend who has walked this journey with me many times, and she reassured me that Elliot is stronger than I think. Yes, he is. This is part of growing up and, hopefully, building resilience. But any mom will have pangs in her heart to feel the warm embrace of your child who doesn’t want to let go.
Through our five days in the hospital, I was holding up. I didn’t fall apart. I didn’t get sick. I didn’t have high expectations for my condition. But thankfully God gave me grace. He blessed me through friends’ acts of encouragement and generosity, phone calls from family, and Chris and Elliot who visited every night. The latter one gave us a sense of normalcy for our family and a chance for the kids to play together.
Thank you everyone for your encouraging comments, support, and love!! These experiences show me how much goodness exists in the world even when the situation seems bleak.
I know there was much more thoughts I had, but my mind hasn’t processed it yet. And if you’ve read this far, thank you.
After all the tests, final prognosis: Abdominal Migraine. Children, from ages 5-9, get this unexpectedly that can last from several hours to 3 days. It’s not a head migraine but a migraine in the stomach. We are resuming an old medication, seeing gi soon, and figuring out its triggers. It may be stress related. I think this may contribute to my stress too!! Next time it happens we will have to go back to the Emergency Department for treatment. This is life for us: a strange norm.