When you meet the .1%

In October 2017, I met the .1% of bacteria that Germ-X can’t touch, but I can tell you my God is 100% faithful.  I faced the largest fears of my life, and the beast of a  little bacteria did not win against the God I worship.  It tempted me to despair, but led me to prayerful dependence on God.  It tempted me to feel left and unloved by God, but my family and friends and angels at the hospital made His love clear. I still believe in God’s sovereignty, and that doing life with Him in the driver’s seat is the only way to go on this broken earth. 

Our family 24 hours before the first sign.

  My foundations were wobbly for sure at times, but never crumbled under the weight of surrendering to the “even ifs” the night my child didn’t look recognizable from 4 days before and frantic panic gripped my soul and body. All I knew was I couldn’t control a thing... and He could, so I begged. There is no time for questioning then... only pleading with a God you know has pulled you through other trials in life. In the darkest nights and mornings you still want Jesus to be with you, even when you don’t understand His ways.  It’s not like I ever expected that being a Christian excluded me from facing genuine anxieties and fear; the Word is clear on that. I have seen life be hard before, but nothing quite so suddenly  life-stopping and full of terror.  Seeing my child’s life almost snuffed out in 3 days by a tiny bacteria, and no erious fever to speak of to warn me of its arrival, was nothing I’d ever spent time worrying about as a parent.  For sure, I’d worried and lost sleep over many things, especially for this child, I prayed for and awaited to love 2 years while she was in foster care. A  song that’s meant so much to me this Christmas season of new beginnings is “Winter Snow” by Audra Assad. He could have healed Molly in an instant, but the most important part is He came. He heard our pleading and my 4am vows to him: “ no-matter-what— but pleases.” He came his own way through His Word, his still, small voice, a song... sometimes just through the peace of her falling asleep and a respite from her pain for me to close my weary eyes too; He came through the love of our mamas and family; graces and wisdom of gentle nurses, tangible care and kindness from friends, a medical break just when we needed a flicker of hope, a card, video, or text when we needed encouragement, a visitor who brought experience, a hug or wise word when I couldn’t take her pain or bad news one more minute, a call to folks I trust when I needed to cry, a sister who swooped in before I hit the wall of exhaustion, urine that arrived just when I was starting to panic, a smile from one of my 4 when I was hurting so deeply.  He came— he’s sent better numbers on her kidneys just when I’d gotten a devastating taste of outpatient dialysis. His voice has been still, small and sometimes hidden, but He came and worked himself into the nooks and crannies of terror, chaos, next steps, next papers to sign, new plans made, monitor and machine beeps, and days and nights that ran together. He always comes. He brought the Hope. He always does.  He is rock, shield, and fortress when the worst thing you can imagine on this earth becomes your real nightmare. 2 Corinthians 4 v 8 is true: We are afflicted in every way, but not crushed.  

While I have been updating our Caringbridge site for friends and family, it has taken me longer to process the past 3 months for a “real” blog of “real” feelings that go deeper than getting through Molly’s day. We have just been in survival mode--literally, for many days of the fall.  

On October 20th evening, Molly started to not want to eat and say her tummy hurts.  By October 21st, we knew that she had what we thought was a typical childhood virus.  On Sunday, she was really not much better, but also never had a fever over 100.2. We went the pediatrician on Monday morning the 22nd, and she gave us some Phenergan and said give it one more day.  However, I could not sleep again that evening with Molly up sick, rubbing her belly, and quite frankly looking at me with fear in her eyes. We reported to the Oconee Memorial Hospital by 9pm that evening, and waited about 6 hours to see a doctor despite being flagged as urgent.  We were moved upstairs and told that the lab work looked unbelievably bad, and must have been some error from the blood “coagulating” possibly. Unfortunately, there was no error.  Our daughter did not have a run-of-the-mill tummy bug, but instead our child had been dying that weekend on the couch at home while I pushed Sprite, Popsicles, and Gatorade to no avail.  By 7am Tuesday morning when the labs were “real” we started demanding to be moved to GHS, but the doctors had also already agreed and called EMS to transfer us to GHS.  I am still trying to forgive myself for the “not knowing,” though the doctors assured me that it was so rare (6% of those exposed to E. Coli will develop hemolytic uremic syndrome-HUS).  Upon arrival at this  great children’s hospital, I thought they’d diagnosis us and give us some meds to “fix IT.”  But, within 20 minutes of getting off the ambulance they told us they were 90% sure of HUS, there are no medications for what she had, and when they called it a syndrome, I had no air in my lungs.  But, Tuesday began fluids for severe dehydration and then a drug that was supposed to help re-start the kidneys. We waited 6 hours for the drug to help, and 2 days for the culture to confirm--It was E.Coli that started this horror (No, we have no idea where or how she got it.).  It was the worst kind of bacteria, one that sends out deadly toxins on a rampage to kill red blood cells, platelets, and kidneys. The kidneys never re-started.  85% recover from HUS to varying degrees and each one takes its own course.  We were forewarned that there was nothing they could do to stop it’s rage ...only “supportive care”--NOT what a parent wants to hear.  We were pleading with God that we could be the ones on the other side of the good recovery statistic.  We are certainly there now, but still waiting on complete kidney healing.  

She went on many walks in this cart.

They described the disease as a “marathon” and they did not lie about that. That Tuesday night, the worst night of our lives, which began a string of a few of those, M was in pain that was unbearable-- that no narcotic could touch.   When things seemed to be getting still worse, we were taken to the Pediatric Intensive Care Unit (PICU) where we would spend our next over 2 weeks.  In the PICU, we began 2 days of continuous renal therapy on a monster machine, with 2 full time nurses and M hooked to 5 things I think.  At one point, I think I counted 15 medicines.  When it seemed the pain could not get worse, it did.  Molly developed pancreatitis and then breathing issues. On the next worst night of my life, she just wasn’t breathing sufficiently.  They postulate that what led to our respiratory crisis was really intolerable pain that led her to quit breathing deeply (though I assure you she was gasping for air with her whole self), and then some scientific terms regarding water on the lungs, and then the right lung trying to collapse.  She was hysterical from pain sometimes, and I badgered a resident all night once, and he did add a 6th medicine to try and help. The nurses helped me not by hysterical or advocate for her sometimes when I asked them what they would do if it was their child.  They told me.  What a blessing.  The respiratory distress led to almost 3 days unconscious on a ventilator.  I told God we couldn’t take anymore I don’t know how many times. A nurse we love told us the ventilator  was for the best...it was time--she promised.  But, to see a machine breathing for your child who was healthy a week or so ago is hard to take.  Still, it was a break from the unthinkable pain for her, and for that I thanked God. After coughing up the breathing tube, the girl started getting up like Lazarus. We asked her where she was headed -- “HOME,” she said. She was also very concerned that they about knocked out both her front teeth (they looked black/blue as did the gum), and she immediately asked the intensivist if she could go ahead and pull the teeth out. She replied, “I’m not that kind of doctor!”   She earned a lot of money all over the hospital for both leaving the tooth in and then for the tooth “fairy” (doctors and nurses all over GHS) when it came out.  She spent every dime given at the gift store at GHS each day!  But, one day she shocked me by putting a few of her dollars in the donation bin in the lobby.  One of her gifts is generosity for sure as much joy as that gift store brought her!

 It is easy to say “trust God” but another thing to do that when babies die in the PICU, kids have brain cancer, and Google says HUS is “life-threatening” on every page, then hourly labs are coming back worse and worse for weeks until they finally start sharing numbers going in another direction-some up and some down. There were days she begged for drink (and food later) we could only give 40 ml per hour, and then weeks where she didn’t want to drink and we had to push 2 liters a day. The amount of chemistry and math in healing from this was unreal. Every hour or so seemed to be a new recipe, a new game plan, a new medicine, a new test, a new theory. Days we begged her to eat and she was still vomiting almost at the 20 something day mark--so defeating to push food and drink all day and lose it all. One evening at 11 pm, she told us that she "just wanted to feel real again."  If I didn't fully grasp it before, the human body is a delicate balance of organs and systems that can both break down and heal with amazing swiftness. I prayed so hard she’d feel real again, and she does!   I felt like making urine would be a cure-all somehow, but it just didn’t end up being the easy fix, though it was huge. The nephrologist reminded me that many with HUS don't survive, don't make urine again, and we are past those hurdles so now we just take it one day at a time and wait. Each patient's body is has a different time table with HUS and this disease affects every body differently. The not knowing where we would get back to is still hard for me. I'm grieving still today over how this critical kidney injury could affect her quality of life, her diet, her blood pressure, etc., moving forward, but I know God will meet us at each unknown.  He says-- I will brighten the darkness before them and smooth out the road ahead of them. Yes, I will indeed do these things; I will not forsake them.  Isaiah 42:16

Graces worth sharing--

*Godly, loving husband who is completely devoted to our family.  His strength, faith, and bravery kept me sane.

*Great grandparents who ran our lives and kept our other kids happy and safe.

*Our friends and family prayed fervently and let us continually know that we were NOT alone.  They prayed for pee like champions.  We literally harassed God for urine and He delivered.  They didn’t just say they cared; they showed it...Visits, meals, loving cards, gift cards, money for my salary that was going to be missing, texted prayers, emails, many videos of love and smiles, caringbridge comments, stuffed animals and gifts sent to bring M joy. My whole life I will never get over their kindness and generosity.  

*There is a reason to hide God's word in your heart since for almost 3 days I was in sleepless, panic mode and had no Bible ( until I found the Gideon one in the waiting room). I have been memorizing Psalm 23 this year and often recite it when I feel my brain running wild at bedtime. Psalm 23 was running through my mind on autopilot at times. During our night from hell of nothing but bad news, then our first of six -eight blood transfusions, signing scary papers at 3am, ICU move at 4am, putting central lines in a fragile body, first dialysis treatments, then blood clotting on day 3, Psalm 23 was there. God's word is living and active. There is no doubt.

*When the horrific labs came back, I called my cousin who is a pediatrician for GHS, at 6am (and he answered), and he confirmed that if they were real, we needed to get to GHS quickly.  We started pushing and she was moved quickly to doctors who had treated HUS before. He helped us through the first weeks of “understanding” medical things and advocated for us. Though we had the Ronald McDonald House in the hours that we wouldn’t go far those first few weeks, we had our cousin-pediatrician’s home literally across the road from GHS. This brought so much peace.

*When we had the first worst (and my second sleepless) night of our lives and we weren’t sure if Molly would pull through when I left the room for the first time to sob in the bathroom and let myself scream and find a Bible, a PICU nurse from our church (an hour away) passed me and sat down and held me. She reassured me we were in a good place, with good docs, and she was going to make it. She prayed with me.  

*No one else got it. Not my children, not other people's kids.  We had multiple foster children in our home the days she could have possibly been contagious--they didn’t get it. This fear also overwhelmed me the first week as well.

*My sister came into town from Charleston and helped us through dark hours on 2 weekends and gave us a night together while M was sedated --a time for us to talk-to eat--to process together--to sleep.  

Aunt Libby to the rescue.

 

*Before a surgery the anesthesiologist came to see us. He told us Kitty can go back with her and we can stay there until she goes into OR with him. But, the best part of his visit is that he'd already prayed for our daughter before she showed up on his schedule. He had heard about praying for Molly at Saluda River Church near Table Rock, and people were praying for her all over the world--literally.

*We go to a contemporary church, and we love it. I enjoy the band and the music. Nevertheless, here in the darkest hours of my life so many hymns have come to my memory from decades ago...Jesus, Jesus, Jesus Sweetest Name I know, Turn Your Eyes Upon Jesus.

*Starbucks was downstairs.  Enough said.

* Though she quit talking at points she always had her wild fighting soul when conscious. It’s what saved her life. When she awoke one day demanding liquids she was quick to tell me, "You don't have to listen to those people (the doctors)." 

* When this happened to our daughter, I didn't have to worry about losing our home or going to work for a while.  We’ve scrimped and saved and worked hard to not have a ton of debt. 

*When this happened, I didn't have to worry about my kids missing Mama too much since their Daddy is fully involved in their care and daily life.

Yes, you see 2 Kittys as I found one one ebay and did some fast shipping. 

*Kitty: Some kids have a Mommy, then a stuffed animal they grow to love. My child had a Kitty, then a forever mama.This year I began to wonder when her love/need for Kitty might wane, but now I'm good with Kitty until forever. Kitty + morphine kept M calm during all this stress, pain, and all these procedures.I grabbed our faithful friend Kitty on the way to the ER. I am thanking God for that grab when my mind was swirling a thousand ways.She was with us at Oconee Memorial as we waited 4 hours to be called. She was there as we huddled together on a tiny ER bed and waited another hour for a doctor, then during our first 2 bags of fluid in the ER, then with her during transport upstairs around 4 am. She was with us in the ambulance to the children's hospital later that morning. She was with us when we hit rock bottom that evening. When we moved to the PICU, she was washed during a sedation; The nurses had her sanitized and back when she woke up.  Kitty was given to Molly when she was about a year old in her foster home, and has been the most patient and loving companion all these years, but Kitty has taken on new meaning. I'll never look at a stuffed animal the same again. People are so loving and the nurses were simply amazing, but there is something about a friend who doesn't talk and has been with you even before your forever mommy. 

*The first time I got up my bravery to walk away from GHS for home Carly said, "When you come home for good, I'm going to go crazy." I assured her we'd both be crazy happy on that day.

*None of her many lines got infections!  

*Ms. Tammy, her favorite nurse, that did her dialysis for hours each week was a constant cheerleader and brought so much joy to our little girl and made her feel so special.  She told us Molly would be "her baby" upon her arrival and sat for all 4 hours of the first few daily dialysis treatments in the PICU. When the machines would signal errors, or M's heart rate would drop, or her body just couldn't do well that day for dialysis she'd calmly make adjustments and smile to keep me calm. She kept her eyes on "our baby" and the monitors and her machines, and she saved my child's life. She told us on the second treatment that she was A positive herself and would give her a kidney if it came to that. She said, “Don't worry if they won't work, she has a kidney waiting.” She swooped in a devastating first day at outpatient dialysis when I sent her a panicky text.  She replied--”Do you want me to just come over there?” And she did.  She came with tubes and things to rewire the machine “just in case” in her purse.   I woke up at 6:30 am (after sleeping late for this past month), and I couldn't quit thinking about what the name of their company meant: DaVita Dialysis. So, I asked the next day and they told me -- Giver of Life.  That is for sure. Not one day of my life do I recall being thankful for my kidneys and the life-giving job they do... or the healthy blood coursing through every vain. Never again. 

*While at the shop motoring around in her wheelchair, two strangers contributed to her shopping addiction. So sweet! She had also flaunted her cash dollar bills to Mrs. Teresa (from housekeeping) stating, " I'm a celebrity! I'm famous!" They made her feel that way anyway!

Robyn took care of us on night 1 (at GHS) and 32!

 

*I can't say enough wonderful things about the children's hospital staff, even if was ready to leave them. They are amazing folks doing amazing work for so many sick kiddos. Facing kids in pain each day, and dealing with frantic parents is a calling for sure. One of Molly's PICU nurses that is especially dear to us (and did her beautiful braids) brought her baby by on her day off to cheer Miss Molly up.  I'm telling you these nurses are so special.

We didn't make it home for Thanksgiving, but she was happily back with cousins for Christmas 2017!

*The heart catheter came out December 20th! We got our Christmas miracle thanks to the prayers of many and the mercy of God.

Things I struggled through and still can’t understand:

*I won’t marinate on this, but this child who I prayed for for 2 years while she was in foster care had suffered enough. Struggled to even make it to the Earth.  Why more trauma?  Why not give her a break for once?  I can’t go here. I just can’t. I have to focus on that God had a special plan to save her life en utero, then again to protect her from abuse and neglect by putting her in loving foster home for two years, then again by adding her to our family.  I have to focus on how God saved her the night she had no platelets and no healthy blood or kidneys, then again when she had no oxygen...how he’s saved her eternally when she asked Jesus to be in her heart. These are the things I must focus on.  

 

Molly spent some time with Miss SC! 

6 blood transfusions (maybe more and some platelets), 2.5 days of continuous renal therapy, over 2 weeks in the PICU, 3 days on a ventilator, 2 operations, and 18 dialysis treatments (or so)  later...we are just following a diet, resting, drinking a ton, and waiting on God to finish His work.  At 4:45 we said goodbye to our nurses after 32 days under hospital care, and headed straight to meet cousins at Disney on Ice by 5:05— oh yes, we did! She took her last nap at GHS with her shoes on while I filled her prescriptions. I can’t express the joy it brought me to see her sister hugging her, her laughing, and eating some very costly Cotton candy like a normal kid! She climbed those stairs to the show like the champion she was.  Molly's life has been far from easy, but I know God has big plans for this brave little girl.

Psalm 28--

Praise be to the Lord,

for he has heard my cry for mercy.

7The Lord is my strength and my shield;

my heart trusts in him, and he helps me.

My heart leaps for joy,

and with my song I praise him.

8The Lord is the strength of his people...

THANKS-giving 2017 with my Miracle Molly!