Posted in Faith journey, Raising kids

Abdominal migraine on our way to Legoland

On our latest vacation, Ellis ended up getting hospitalized for abdominal migraine again. This happened the first day of our long-awaited trekk to Legoland, San Diego.

Fortunately our plan involved an overnight stay at my parent’s house, because at 1 a.m. I was frantically googling to find a new children’s hospital that had extensive experience working with Hypoplastic Left Heart Syndrome kids. Throughout the day, we tried multiple home remedies but nothing worked: Motrin, prescribed anti-nausea medication, Pedialyte, tummy massage, and many piggy back rides to distract from the pain. It was time to go to the hospital when her breathing sped up and she couldn’t be consoled.

Car rides to the emergency room is especially horrendous in the middle of the night, and this night was no different. I couldn’t believe we were in this situation again, and all kinds of scary thoughts passed through my mind. Well-meaning friends and family tell me not to think of death, but it’s a constant worry for us.

Almost every night I dream of hospital corridors, waiting for doctors, feeding tubes, shots, patients in gurneys, operation rooms, me in her place; my fears project through these nightmares. Doctors told me it’s common for parents with heart children to struggle emotionally and have symptoms similar to Post Traumatic Stress Disorder. In these situations, you brace yourself for the worst and you stil continue to pray and pray for the best outcome.

At 2 a.m. we arrived at CHOC, the Children’s Hospital in Orange County. Before the car even stopped, my car door was already half open and my body ready to jump out. I walked up to the registration window with Ellis, holding a green barf bag, in my arms. I explained how she has a single ventricle, been vomiting continuously, and that she is breathing rapidly. Thankfully, the admitting nurses checked Ellis’ vitals right away and took her into the examination room. If we had to wait, I would’ve had a fit and made a scene although you could tell immediately looking at her that this was urgent. I’ve learned that making a lot of fuss speeds up the process…most of the time.

Our family tries to take these life interruptions in stride, but it’s difficult to accept when they happen. Guilt consumes me: maybe I could’ve done something to prevent her from getting sick; how is Elliot going to deal with this again?; and I feel the weight of Chris’ responsibility in carrying us through these emergencies.

After an initial check up and hours of waiting for test results in the examination room, the attending doctor said she’ll get admitted to treat dehydration and monitor her condition.

Moved up to patient floor from emergency room. Knocked out from pain medication.

With lots of desperate prayer and encouragement from close friends who reminded me to avoid the “what if’s,” I reluctantly let go and decided to let God. He doesn’t take the situation away but He pulls us through. I have to remember that He has good plans for me, even though I don’t understand. I wish I could say that I trusted God from the beginning without all the kicking and screaming, but sadly it wasn’t so.

What I’m going to write next is bizarre. But some of my happiest memories include these hospital stays. It’s a different kind of existence where outside worries stay outside and it brings life’s priorities into perspective. Isolation rooms really make you think and bring you in closer relationship with your child. The bonding is special and I realize that God has given me an important job to take care of this little person.

I can only attribute it to God’s peace, the only kind of peace that passeth understanding (like the lyrics I used to sing in Sunday school).

The second day in the hospital fell on Mother’s Day. I forgot all about it until the nurses reminded me. That wasn’t the reason why I cried. My heart was breaking for Elliot who tries to act happy when he is scared or sad. He knows that we are stressed so he overcompensates with good behavior and kindness. Then, I look over and see Ellis slumped over in bed and I cry for her too. Ugh, so many emotions.

Elliot and I spent some quality time together when he visited with Chris the next morning. We took walks outside holding hands, talking about how he slept little because of daddy’s snoring, enjoying the fresh air together, searching for Starbucks, and of course, making a quick stop at the gift shop.

Midday our wonderful nurse Andrea informed us that we will be discharged the next day. We were in much better spirit with family who visited us, family waiting for us to come home, watching “Raven’s Home” on marathon, and freely taking Ellis on wagon rides around the hospital.

CHOC lobby

In the middle of washing her up before bed, she looks up and says, “Mommy, thank you. I know you’re trying your best to take care of me.” Her comment was unexpected and it took me aback. My goodness, she has matured so much. That’s an affirmation I will never forget.

Ellis was discharged the next afternoon. Diagnosis was abdominal migraine again. It’s hard to define it and it’s a cause that resulted after other possible causes were eliminated. She went through days of testing last December to find out what causes these bouts of cyclical vomiting and intense abdominal pain.

There’s not much you can do to control it except to avoid triggers. I asked the doctor what to do if this happens again, and the answer was a bit disheartening: bring her to the e.r. This means that we need to be in driving distance of a hospital wherever we go and our hope of camping outdoors for the first time this summer is definitely a bad idea. Oh well.

We adjust and make the best of our situation. It means we can’t easily do what others do and much more thought goes into making simple decisions, like deciding if we can go somewhere or do something out of our routine.

Although our vacation plans got off to a rocky start, we still got to do lots of fun activities. We also spent more time with family than expected and shared some wonderful conversations and meals together. We still made it to Legoland for the first time and revisited our favorite San Diego Zoo.

Lucked out and saw a baby giraffe

What a trekk! What memories! I assume our next vacation will be a staycation.

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.