Posted in Raising kids

How will people know it’s me?!

I was going to post about Ellis’ new look and it was perfect to connect it to Nancy Merrill’s Photo A Week Challenge about something new, in anticipation for the new year. Thanks Nancy for hosting this challenge! 

Glasses are a new thing for Ellis. It’s not a forever thing; only a couple of years to strengthen her right eye. 

But a serious question has been worrying her.

When she wears them, how will people know it’s her?

So I asked her to think about mommy wearing glasses. When I put on my glasses, do I change into someone else? I’m still the same me. We had an existential talk that wearing glasses doesn’t change who you are or make you unrecognizable to people who already know her. Still, she’s wrestling with this big question.

She’s not too sure about this new look
Posted in flower of the day

Flower of the Day: December 26, 2018

Kids and I took a relaxing stroll outside this afternoon: Ellis on stroller smelling her blankie and Elliot walking next to me. Usually there’s a bit of chatter and running around, but today was time to slow down.

The afternoon breeze and seeing the last bit of richly hued leaves were delightful. December is almost over, yet glimpses of autumn are still visible.

Colors remind me of sunset

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