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

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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.

  • Outta here
  • Deliriously happy
  • One last pic with brother in the lobby
  • I’m back!

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.

Categories: Hospital visits

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singlikewildflowers

Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!

30 replies ›

  1. Bless her hear and Elliot’s. Its a lot for little ones to take on. And bless you and dad for your strength and resilience. May God wrap his arms around the whole family and give you all a very Merry Christmas. I will add extra prayers tonight. Thanks for the update.

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    1. Thank you for your constant encouragement and you journeying with us via blog!! It is hard for my kids to handle the stress and disruptions that sickness causes in our family. I appreciate your friendship and your prayers. Hope you and your family had a great Christmas!!

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  2. I am so happy that you are back home and have peace of mind about her heart. Hang in there, you and your family are so strong and amazing. I know you are so tired but I hope you can have a Merry Christmas!

    **** It’s well deserved!!

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    1. Hi Lucy, thank you for your encouragement and for the kind words!! It’s been a rough month, and I’m ready to move on without all this happening again.
      I hope you had a wonderful Christmas and get to have a restful week!! 🙂

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      1. I understand very well how you are, I also had difficult times in the hospital with my middle son when he was little.
        Thanks, we’re just spending some relaxing days together, talking a lot, playing a lot; the greatest gift is the time together, that remains in our hearts.

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      2. Thank you for your comment! It’s not easy being in a hospital for a little kid. I don’t know what your son was in the hospital for, but I hope it’s a thing of the past that is resolved. It’s good to know that I’m not alone.
        Happy new year and enjoy the last few days of 2018!!

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    1. Merry Christmas to you too!! I hope you and your family are well. It’s been quite a month for us. It’s good that doctors know that the heart is working well, but this new thing about abdominal migraine is better than having heart issues. One of the things that triggers it is stress. Must aim for a low-stress life!! This is a whole family effort.
      Stay well and healthy!!

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      1. Yes, your last month was really up and down… But when I saw title – heart is well – it was really nice to read it. 🙂 On other side now you know and I hope that you will find the best way how to avoid triggers. We are generally well, just some cold with oldest, but hope other kids will be OK.

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      2. Whew…so relieved it’s not the heart. When I write about Ellis and her medical issues, I wonder how you guys are doing. Yes, now I know so I can try to help before freaking out.
        Glad to hear it’s only a cold and nothing more serious!! Happy new year…

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      3. Our little one is good. We had chech up three weeks ago and his heart is really OK, oxygen saturation is stable 80-81%. The plan for Fontan is next summer and…. I just wish it was already over… But, day by day…. Happy New Year to you too.

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      4. I remember post-Glenn oxygen saturations in the low 80s. It was a time when I would look for any color change on her face, nails, and tongue. Our family couldn’t wait for the Fontan to be over…we were always talking about it and taking precautions to keep her healthy for it. Glad to hear your little one is doing good! These heart kids are resilient and brave. I hope you are taking this time in stride and not getting stressed. Enjoy this time when there’s no looming surgery date.
        Take care and hugs!!

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      1. It’s hard to see our children go through all this. I’m glad that our experience helps you!! After the Fontan, oxygen saturation goes up and the blueness goes away. I’m trying hard to give my kids normalcy too, but it’s always going to be different than others. You are doing great!! Hang in there and wishing you all a healthy new year. 🙂

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  5. Blessed Christmas! It is so good to have a diagnosis; because, now you can keep an eating journal, activities, what is going on that could trigger her abdominal migraines and try to avoid them. I have extra shoes and clothes in the trunk of my car; you can have an emergency bag for you and Elli in case you need to take her to the ED in the trunk of your car too. This way you can stay calm and that will help her too to deal with the stress she must feel knowing she is going to the ED again. May 2019 start with lot of health for your whole family!!

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    1. Thank you for sharing your suggestion!! That’s a practical and helpful idea. Last time I was running out of the house to the ED, I realized how much less stress it would have been if I had an emergency bag already prepared. It’s denial that keeps me from actually doing it.
      I’ve noticed some patterns that triggered her abdominal migraine but they weren’t out of the ordinary, like doctor’s appointments. One difference is that she comprehends everything that is talked about in doctor’s office and it brings back bad memories for her.
      Thank you for your well wishes!! Hoping and praying that 2019 will be a healthy year.
      Hope you had a merry Christmas and wishing you a great new year!!

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    1. Great relief!! She had another mini bout that almost had me at meltdown again. But I’m learning to appreciate good days and trusting God. Can’t wait for the new year!! Thank you for your sweet message. 🙂

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  7. Oh, my goodness, how scary, but wonderful that it all turned out okay. I have never heard of a stomach migraine! I’m so glad to read his heart is okay and that you’re okay too! Hugs to you, you’re such a strong mom! xx

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    1. You are not alone…we were all scratching our heads with this diagnosis. We need to be more vigilant about stressors that trigger it and hope to avoid them in the future. Yes, we are relieved her heart is well. Her spunky self is back! Thank you for your sweet words!!!

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