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| April 23,2011 |
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| 1 Day Old |
Hi, My Name Is Rachel And I Wanna Share My Daughter's Story With You
My Beautiful Daughter Lulu Was Born November 10,2010
She Was 7 Pounds 15oz And Was 20.5 Inches Long
Her Very First Bottle In Hospital She Started Spitting Up.
All Babies Spit Up Its Normal, But My Daughter Was Spitting Up More Then Normal
About A Week Old She Was Diagnosed With Acid Reflux And Was Put On Enfamil Nutramigen And Rice
Cereal To Try To Help With The Spit Up And Was Put On An Apena Monitor... The Apena Monitor Was Cause When She Use To Choke And Stop Breathing Due To The Reflux..Then A Few Week Later We
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| At Cardiologist At Scottish Rite |
Went To Pediatrician And She Was Doing A One Month Check Up On Lulu And Heard A Heart Murmur.. She Told Us It Could Be Nothing But She Still Wanted To Be Safe And Checked It Out.. Then She Sent Us To A Cardiologists... They Gave Us Good News... It Was A Innocent Heart Murmur.... After A Week Or So Later My Daughter's Pediatrician Made Us An Appointment To A Gastroenterology Doctor... Gi Doctor Seen Lulu And Put Her On Zantac And Previcid
And We Thought That Was The End Of Her Refluxing...But On January 13,2011 My Daughter Had Refluxed To The Point She Turned Blue And Limped And Thank God For My Mom Who Was There When It Happened Cause She Grabbed My Daughter From Me And Started Blowing On Her.. As She Was Doing That My Dad Jumps In Truck And We Rush To Local Hospital Which Was About 8 Blocks Away.. My Mom Got Her Back About 30 Seconds Or So... Then On Way To Hospital She Done It Again And Got Her Back As We Was Pulling Into The Hospital... As We Ran Into Hospital We Told Nurse She Had Stop Breathing Twice, Then Nurse Grabbed Her From My Mom As She Started To Reflux Again And Ran In Back Screaming For A Doctor.. She Was Put In Room And Was Being Checked Out By Doctors... Doctor Told Us We Are Not Equipped To Take Care Of Her Here.. We Are Contacting Atlanta's Childrens Hopsital And Having Her Sent There... About 45 Minutes Later Childrens HealthCare Of Atlanta Ambulance Pulled Up And Took Us There..
She Was Watched Very Closely And Was Not Allowed To Drink A Bottle Cause Her Refluxing.They Put A Ng-Tube In For Feeding Tempory Cause They Wanted Her To Do Test To Rule Out Aspiration.. She Did A Swallowing Test Call Opms And Came Back That She Was Aspiration On Thin Liquids And It Was Going Into Her Lungs.. They Played With The Rice Cereal And Her Formula To Get It The Right Consistency... In All That Time We Was Admitted In a Week Before We Got Discharged.. Thicken Formula And Prop Her Up And Burp Her As Much As Possible Is What We Went Home Being Told... Then January 31,2011 My Daughter Did It Again To A Point That My Mom Was Breathing For Her...(So Glad For Living With My Parents) She Was Admitted Back In Childrens Hospital And She Was Put Back On A Ng Feeding Tube.. Gi Doctor Told Us She Has Severe Acid Reflux And At This Point Its Best To Do A Nissen Fundoplication To Tighten Her Stomach Muscle...So On February 8,2011 Lulu Went Into Surgery For Her Reflux... (WHO KNEW AFTER THIS POINT THINGS WOULD GO BAD) Surgery Took Longer Then Normal... I Was Going Insane... At This Point They Come Out Telling Me And My Mom That Lulu Was Having A Hard Time Waking Up And Breathing On Her Owe And That She Was Being Rushed To Pediatric Intensive Care Unit ( PICU) Her Surgery Went Good She Just Was Allegic To The Anesthesia... She Was On 8Liters Of Oxygen At 100% She Finally Woke Up 6 Hours Later In Picu.... After Three Days In Picu She Was Put In A Regular Room And Her Fomula Was Changed Due To She Wouldnt Need It Anymore... So She Was Put On Good Start Gentle Plus..So On February 16,2011 We Got To Go Home Thinking It Was Gonna Be A New Start For Lulu...
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| Few Weeks After Sugery |
Then In March She Was Admitted Back In The Hospital Cause She Wasnt Drinking And Was Losing Weight... She Was Put On A Feeding Tube And I Was Taught How To Work It And How To Check For Placement.. Few Days Later We Was Discharged And Sent Home On A Feeding Tube... She Was On The Feeding Tube For 6 Weeks... Then She Started Refluxing Again And Was Put Back In Hospital And GI Doctor Did A PH Probe Test On Her For 24Hours To Check Stomach Acid Levels... Came Back Normal And They Changed Her Formula Again And Put Her On Simalac Sensitive For Fussiness And Gas....They Let Us Go Home Without Feeding Tube As Long As She Can Drink A Bottle....She Was Doing Alot Better Now She Was Eating Baby Foods And Drinking Bottles Really Good, Then Slowly I Started Seeing Her Cough Or Choke On Baby Food And Her Formula .. I Thought It Was Nothing To Worry About.. Then June 9,2011 Came And She Had To Do Another Drink And Swallow Test ( OPMS) Bad News Followed After Doing That She Aspirated On Thin Liquids, Nectar Thick Liquids And Baby Foods... We Was Told She Needed To Have A Feeding Tube In Asap Cause Everything She Would Eat Or Drink Would Go Into Her Lungs All Consistency...She Was Admitted In Hospital On June 10,2011 And Gi Doctor Wanted To Rule Out It Being A Brain Issue... So She Did A MRI And It Came Back Clean... So We Was Sent Home On A Feeding Tube With No Answers On How Can She Fail Her Opms Test From Passing It 3 Months Prior... I Wanted Answers So I Googled And Found A Gi Doctor That Was With Scottish Rite And Went And Seen Him.. He Was Troubled Too And He Wanted Answers Also ...So He Had Us Go See A Neurologist And An Ent Doctor We Did... The Neurologist Looked At Lulu And Did Her Exam And Told Us She Wanted To Test The Lulu For Myasthenia Gravis Cause Lulu Had Droopy Eyelids, No Eye Movement She Would Have To Move Her Head Side To Side, And Swallowing Problem Which Was All Symptoms Of Myasthenia Gravis.... We Only Notice Her Eyelids Drooping Down When She Got Tired .. Never Gave It Any Attention That Her Eyes Didnt Move.. We Figured That Was Normal Lulu... We Went To Ent Also And He Checked Her Out And Did An Scope Test On Her In The Office And He Noticed Her Throat Was All Inf lamed And Red And When She Cries She Still Refluxes..
Then On Friday December 2,2011 My Daughter's Neurologist Called About 6Pm And Gave Me The News... That Lulu's Blood Test Came Back Positive For Congenital Myasthenic Syndrome And She Explained To Me That Its Very Rare... Its A Muscle Weakness And Its Not Cureable... Theres Only Medicine To Help Treat It..... So The Next Day Was Saturday December 3,2011 And Again We Got Another Call From Neurologist And She Told Me That She Wanted To Admit My Daughter Into Hospital On December 6,2011 For Treatment At Childrens Health Care Of Atlanta
So Then We Was Admitted In.. Her Very First Treatment Of MESTINON 60 MG /1.25 ML Every 6 Hours
As Soon As They Gave Her The Medicine Thru Her Feeding Tube She Fell Asleep, Not From Medicine Just Cause She Was Tired...She Slept For About 2 Hours And When She Woke Up We Seen In Provement With Her Eyes... She Was Actually Getting Scared Cause Her Eyes Was Moving And She Kept Covering Up Her Eyes.... That Made Us Very Very Happy.. It Gave Her More Energy And She Didnt Go Back To Sleep Till About 10:30 That Night... The Next Day In Hopsital I Noticed A Very Big Diffrence In Lulu.. She Was More Hyper, More Active, Climbing On Things And That Her Voice Was More Clear.. She Was Also Starting To Say More Words.. She Wanted To Get Up And Go... I Didnt Know How Weak My Child Was Before This Medicine Till Now...Day 3 In The Hospital She Let Go My Hand And Took 4-5 Steps All By Herself... Very Proud Moment..
We Got Discharged On Thursday December 8,2011 With The Feeding Tube Still... Hopefully The Medicine Is Working On Her Swallowing And When She Goes For Her Swallowing Test On December 16,2011 She Will Pass And Feeding Tube Can Come Out...
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| Droopy Eyelids |
I Wanna Say That My Daughter's Neurologist Is Awsome... If She Didnt Take Her Time And Wanna Find Out What Was Going On With My Daughter We Would Still Be Going Insane Right Now...
Thank You Doctor Jamika Hallman-Cooper We Love You
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| Droopy Eyelids |
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| At Neurologist Dr Hallman-Cooper |
