Posted in Hospital visits

Ellis’ update: Heart is well! Instead, it’s abdominal migraine.

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.

Sleeping on the daybed with mommy instead of the hospital bed. Don’t care about the crazy bedhead. 🙂

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.

Posted in Hospital visits, Raising kids

In the e.r. again with stomach issues

Today was Ellis’ third trip to the e.r. in one month. Speechless. Familiar frantic drive, packing overnight hospital bag, phone call to Chris to hurry home to babysit Elliot.

I hope this time they find the root cause of the severe stomach cramps and dry heaving. She shakes while her body is hunched over her throw-up bag. No answers. The symptoms come fast and severe: they immobilize our family into basket cases.

Waiting for test and imaging results in the e.r. Looks like another hospital stay.

I pray that I don’t fall apart. I’m holding up, but this is a lot of mental, emotional, and physical strain to take: 3rd e.r. visit in one month. If we stay, 3rd hospitalization.

You know it’s weird when lab people and nurses recognize you. I just saw the front desk lady from Standord heart center in the e.r. this afternoon: her son was sick. Small world.

My heart goes out for Elliot. He’s just doing his thing and he gets thrown into these overwhelming days: mommy crying, running around packing overnight bag, Ellis throwing up, me calling people for help.

He’s familiar with the emergency drill but today we couldn’t follow through with our afternoon plans and picking up Chik fil A. With tears in his eyes he said, “Ellis is getting kind of annoying.” But just yesterday he held her blankie while she was throwing up. Complex relationship. We’re figuring it out.

Thanks Chris for holding down the fort at home! Doctor is calling the children’s floor to get us admitted.

Today is one wild december day.

Ninja pose this morning

In the er this afternoon

No definite reason for dry heaving

Posted in Hospital visits

Busy month with hospitals

Btw, it has come to my attention that those who follow me via email received an earlier edit of this post. Something is going on with my phone and WP, so please ignore the untitled one.
Read this one instead. Thanks!

Quick note: This post was written in between breaks with Ellis sitting on my lap at the hospital lobby. To keep myself from exploding at the unreasonable wait time, I blogged instead. November 28, 2018

What a week it’s been. Ellis got discharged ftom the hospital last Wednesday and the rest of the Thanksgiving weekend went smoothly, like really well. Today is next Wednesday and we were back at the pediatrician’s office. And we just finished getting an ultrasound at the hospital. Ellis screaming in pain intermittently over her stomach spasms. No explanation.

I’m not a runner by no means, but today I ran. I parked my car in the red zone because the valet parking line was so long. I figure the valet person would understand and take my keys. Whatever!! If she didn’t take my keys, then I would have just left my keys on the counter or risk getting towed. I ran holding her in my arms with her brown bear blanket draped over my shoulders.

My demeanor screamed “get out of my way!” You wouldn’t want to mess with a crying mother with her purse dangling from her neck holding a sick kid barfing into a grocery bag. Amazing how things don’t matter when you’re in an emergency and when your child is crying in pain. You don’t care. You don’t see. You just aim for the front doors and for immediate help.

I won’t get into the details of registration hell.

Tentative prognosis: inflamed pancreas. We’re admitted again to the same hospital. What a day. Pain med has kicked in. She’s not so angry with me now. It’s going to be a long couple of days.

New update: not pancreas issue. It’s probably residual virus from last week. This requires a blood draw. But white blood cell count is normal; probably not a virus or infection. Another blood draw: maybe toxicity from one of her heart medications. Nope, not that either. She held onto her blue throw up bag all day.


Every late autumn to early winter since her birth, she’s had some kind of sickness that landed us in the hospital or pediatrician’s office.
  1. 1st year: hospitalization for rsv.
  2. 2nd year: hospitalization for norovirus.
  3. 3rd year: bad cold…recuperated at home. Awful coughs that made her blue and gaggy. Tearful experience for me.
  4. 4th year: emergency room visit and frantic meeting with cardiologist over head contusion from falling out of carseat, not good with her Coumadin medication. Then, she caught Chris’ stomach bug on top of that.
  5. 5th year: 2nd hospitalization for stomach bug or whatever it is in 1 week. Whew, I’m pooped. But I’m thankful her pain is managed. I was helpless at home.

Not knowing the cause, we got transferred to Lucile Packard Children’s Hospital 10:30 p.m. They are familiar with Ellis’ history, so our adventure continued with an ambulance ride.

No explainable cause from them either. Her stomach pain was still severe and she couldn’t lay down. I could do nothing but rub her back. I was running on fumes and all the new nurses and doctors in a bright room took me out of my comfort zone.

A few hours later, she fell asleep without pain medication. Her condition started to improve. Sigh of relief.

Elliot was managing well at home too. It makes me sad that he misses out on lots of things, but I trust God will fill in the gaps. His maturity astonishes me; although he’s been calling me every hour asking when we’re coming home.

What a month. I had no idea November would bring all these ordeals. But I am thankful that I have Chris & Elliot, family, and friends who encouraged me when I felt overwhelmed. Elliot was a super trooper; he reminded Chris of all the things I asked him to bring to the hospital and ran a bunch of errands with daddy without complaining.

On our last night at the hospital, we hugged goodbye outside the hospital room. Then he said that he wished he could spend the night at the hospital with us. Everyone giggled at his  comment, including the nurse.
Pretty big room with a pull-out sofa for parent. The room size convinced Elliot that there was plenty of room for a sleepover.

Have a healthy, blessed, and joyful holiday! Praying for peace and happiness.
In these moments of being away from homeand feeling vulnerable, I kept praying to myself that I won’t fall apart or get sick. It seems selfish to think about me, but to caretake someone else I need to be well.

Somehow in my desperate moments God pulls me through these challenges and gives me strength that I did not have. There’s no other explanation from it; the effects of coffee can only keep me running on auto pilot. God whispers comfort when things are spiraling out of control. He is a good God.
Posted in Hospital visits, Personal growth

Happy Thanksgiving!

Happy Thanksgiving!! Wishing everyone a gratitude filled and memorable day with family and friends.

For us it’s been a rough start to this week with Ellis suddenly getting sick with a stomach bug. All of Monday I hoped to manage the sickness at home, but she got stuck with a really wicked one. The vomiting persisted but the stomach spasms gave her too much discomfort. Even after her heart fix I did not see her in this much pain.

Ended up at staying in the hospital for 2 nights. With her stomach bug, we were in isolation in the hospital room: whoever came into the room had to wear scrubs. But one wonderful thing was that the nurses made our stay as comfortable as possible. They are truly amazing people who don’t squint at things that would make someone else queasy.

Also, the pantry had a beautiful Starbucks coffee machine…decked out in high tech: accessible all hours of the day. This coffee machine took the edge off for me and I was relieved that I wouldn’t get stuck with caffeine withdrawal headaches. Also, I was very thankful for our health insurance. The stress of not being insured in this situation would’ve wiped me out.

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The superb Starbucks coffee machine

I’m grateful for all the the nurses we encountered; their patience and care made all the difference. I’m grateful for our pediatrician, Dr. K., who has been an endless source of support, encouragement, and guidance since Ellis’ birth. What an amazing person she is; both my kids receive her care and they ask me to call her when they feel sick. Dr. K. checked up on Ellis the next morning at the hospital, and we lit up at the sight of her.

On this Thanksgiving day, I’m grateful for my family. I’m grateful for my friends. I’m grateful that I can stay in my pajamas all day and still my kids think I’m beautiful. I’m grateful that Chris is home and has been preparing meals for the kids.

Thank you for listening to my gratitude list: there’s more but I won’t bore you with them.

God is so good to give us a day of thankfulness to share!! Thank you readers and fellow bloggers for journeying with me.

Psalm 9:1

I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.

Philippians 4:6-7

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hears and your minds in Christ Jesus.

Posted in Faith journey, Hospital visits, Uncategorized

Thankful for a great year since Ellis’ heart surgery on Sept. 25, 17

One year ago today, Ellis underwent her third heart surgery. Even before her birth, doctors warned us of the various medical and lifestyle challenges we would face in the first few years of her life. They weren’t lying.

It. Was. Tough.

We operated on survival mode and were content with just “getting by.”

Getting to the third surgery wracked our nerves with everything put on hold. So when her cardiologist informed us that surgery was in the horizon for 2017, we were relieved. Our hermetic life continued to make sure she could have the surgery: she had to maintain a constant weight of 30 pounds and keep her healthy to undergo the surgery. The latter was stressful trying to keep all four of us healthy: if one person got sick, it was inevitable that it would pass to another member.

I had to be creative to pass the time; many days I was tired even before the day started. Passing the time meant taking frequent nature walks around our neighborhood, spending many, way too many, hours making crafts with random items laying around the house, and experimenting with making our own YouTube toy review videos (none posted by the way).

Kids knew no difference with this kind of life but it bothered me. I used to joke that my life revolved around a 5 mile radius of our house; I never left San Jose nor rarely left Ellis’ side. I pressured myself to do more from fear that my kids would turn out weird from this unusual life situation. Also, will I have no friends after this? I had to get accustomed to this life circumstance and embrace its unusual nature. Yes, I will…I will as Thoreau wrote, “March to the beat of your [my] own drummer.”

God had big life lessons to teach me in this season of life. First of all, He reassured my heart that we would survive and that we were not alone. We experienced extraordinary kindness from family, friends, and strangers, and experienced God’s reminders that we were loved. I learned that this was a necessary yet scary phase we had to overcome before our circumstance could change for the better.

What a hard lesson in learning about setting my priorities and trusting God. On the outside, you couldn’t tell I was buckling inside from fear, depression, and exhaustion. Alone at night, I felt close to falling apart and not wanting to open my eyes in the morning.

A Time for Everything

Ecclesiastes: 3: 1-8

1  For everything there is a season,
    a time for every activity under heaven.
A time to be born and a time to die.
    A time to plant and a time to harvest.
A time to kill and a time to heal.
    A time to tear down and a time to build up.
A time to cry and a time to laugh.
    A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
A time to search and a time to quit searching.
    A time to keep and a time to throw away.
A time to tear and a time to mend.
    A time to be quiet and a time to speak.
A time to love and a time to hate.
    A time for war and a time for peace.

 

We’ve come a long way since last September 25. There’s been some emergency room visits but nothing in comparison to the past. Ellis knows her heart is fragile and that her condition requires special care, frequent check-ups, and daily medications. Elliot is well aware too of our unique situation and he is familiar with the protocol when Ellis needs to go to the hospital. His resilience and understanding that he needs to let us do our thing makes me proud: he has many questions about his sister’s heart, fears about death and sickness, dealing with feelings of why his sister gets so much attention, and yet he still sees himself as her protector.

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Elliot demonstrating his dinosaur roar to the lab technician for poking Ellis with a needle.

What a difference a year makes. Thank God for his grace and for leading me through those difficult times. I felt closer to God in those moments than in happier times. He reminded me that I can rest my fears in Him, even the fears too painful to acknowledge.