‘Aint No Sunshine When She’s Gone
Nearly 10 years later, and this child is still baffling doctors and giving her parents grey hair! We’ve been in the hospital for a week now with a pretty sick girl who has largely left doctors mystified as to the source of her pain. We were admitted for suspected appendicitis – chronic lower right abdominal pain. But, as the days an symptoms have unfolded, batteries of tests have been administered and specialists have been consulted, they’ve identified other culprits as factors in her pain. It wasn’t until day 5 that they found growth of not one, not two, but THREE different strains of E.coli bacteria in her system! Additionally, a partial intestinal blockage is believed to be trapping feces and retaining infection in her body and causing inflammation. Her pain has ranged from moderate/constant, to fever pitch acute pain. But in a week now, she hasn’t had a moment pain-free!
We thought we were on the right course treating with a cocktail of mega doses of broad spectrum antibiotics, anti-parasitic meds, anti-inflammatories, probiotics and laxatives. We’d even begun to discuss with the doctor the possibility of moving to oral meds and going home if she improved enough.
Then Sunday night she nose-dived! A new symptom of nearly incessant vomiting throughout the night and into the morning left her absolutely wrecked with pain. Doctors became concerned this might be evidence of a complete intestinal block requiring emergency surgery and began prepping her for yet another CT scan (we’ve had mega doses of radiation CT’s/X-rays and ultrasounds this week!!). The anti-nausea meds couldn’t touch it and she was dry heaving for hours! For a child already suffering from stomach pain, this was agonizing!
The culmination of pain, stomach spasms, depletion from not eating for days and exhaustion from not sleeping sent Evie into (what we now believe was) a full blown anxiety/panic attack – but at the moment, no one knew what was going on. She very quickly became disoriented and couldn’t communicate clearly. Was just panting “Mommy, I can’t breathe….do something….Im scared….help me“. The nurses began swarming into the room taking vitals and trying to assess what was going on. But she couldn’t communicate. Gasping, hyperventilating, eyes darting around the room, cold shaky extremities, writhing in pain, tears streaming down her face….it was agonizing to watch and traumatically, all Evies sisters were in the room for the episode! Its amazing how quickly your mind can go to a dark place. I was flooded with memories of another hospital room with nurses frantically trying to gage what was going on! Sometimes “God be near” is the all you can breathe as you look into the eyes of your suffering child!
Evie was put on oxygen and sedated. Sad to watch, but honestly the best thing for her. She’s languishing and just needed SLEEP! The rest of the day, she seemed to decline with no energy to even stand. Even after sleeping off the sedation, she couldn’t keep her eyes open. Then being asked to drink a liter of contrast fluid before the CT was awful after nothing on her tummy for days and 16 hours of vomiting.
CT last night ruled out some of our biggest fears leading doctors to continue the current course of treatment….addressing the infection, controlling the nausea, and giving her time to heal. The thought is that the infection triggered Irritable Bowel Syndrome and that colitis may have left ulcers which are not going to feel better immediately even if the infection is gone. They are talking about this healing process taking weeks!
We are weary. C was out of the country most of this week and Abi has just left for a month. Evie’s spirits are down from just sheer exhaustion and being confined to a depressing hospital room. Mommy guilt plagues me at times with the children at home being neglected – especially today on Izzy’s 11th birthday!! Ive been home a total of 3 hours in the past week. Thankful that the hospital is walking distance from our home so they can visit often! Spending time yet again in Psalm 139 – Evie’s verse! He knows the intricacies of her frame and has ordered her days and cares even more for her than I do!
~ Pray specifically that we can get out of the hospital soon! We need marked improvement before we can switch to oral meds and take our girl home to heal. As Eden and I (mommy) have been her constant companions, we’ve come down with a nasty hospital bug and have crummy tummies too (no not the same as Evie – but just generally miserable!)
~ Pray for wisdom for doctors if there is anything we are missing. They hope to see a gradual trend toward less pain. If not, the next thing they will do is a colonoscopy and have even talked about exploratory surgery which we are very uncomfortable doing here in Thailand!
Oh Mandy! So upsetting to read! Edie is in our prayers and so the rest of the family! Thank you for keeping us I formed! Love to you all!
David and Tricia
So so sorry this is happening. Will pray…may God flood you with his presence and peace.
Oh friend, so many tears. I can’t image seeing and going through this for your precious girl. I will be continuing to pray and my heart hurts for you!
Bless her heart. Hope you feel better soon Evie. It is not a fun thing to be doing. Take care. Praying for you in Ohio.
Praying right now! Praying that God, who knows every intricacy of her body, would touch every place and bring healing and pain relief. Praying that He would speak to the doctors in their sleep, giving them answers to what is going on. Praying for a sense of peace that can only come from Him for you, Mandy! Praying for quick healing for you and Eden. Praying that your other sweet kids would feel honored to hold-down-the-fort while you are away and that they would have a sense of purpose and pride in knowing that they are caring for you and their sister by doing so. Praying that your momma’s heart is kept strong by our incredibly loving, all-knowing Savior!
Watching for updates and continuing to pray friend!
Your sister,
Cassidy
Prayers for your family!
May God shower all His Bliss over Evie, her brave mom and all that beautiful family.
How horrible!! I’m so sorry! Praying for you, and your brood, Mandy. Is she sensitive to gluten or have food allergies?
Praying often for Evie, you and Chad and all your family as you go through this. Our hearts ache along with you as we imagine what this must be like for you. We are asking for the Lord’s obvious presence, His power to heal, and His perfect love and peace to bring comfort and strength. Much love to you all.
Mandy, my heart is with you and your little girl more than you know and I am praying for the Lord’s merciful healing power to be glorified even today in Evie’s body! Love ❤️, the Janes Family
Oh, Mandy, just know we are bathing little Evie and your family in prayer. We send our love, Sandy