Thank you for taking the time to read the next few lines. We hope nothing more than to share our family's story and the struggle our little girl has been going through her whole life, specifically this year alone. We promise that, by the time you finish reading this year's events only, you will not be able to keep up with what our family has dealt with, and yet we hope that you still choose to become a part of us, even if it was just for a moment. For Laurel and her parents, your prayers would suffice, yet any monetary assistance to keep this family afloat and make a girl's birthday wish come true would mean the world to us. Thank you for whichever you choose to do and god bless you.
Laurel has been dealing with Cystic Fibrosis (CF) her entire life. With a smile on her face and faith in her heart, she still fights day in and day out to live a normal life. She is now 17 and this year is taking a heavy toll on her and her family. Laurel will not be able to swim this summer or take part in any water activities. She doesn't get to be a carefree teenager because of her med schedule; she will be hooked up to an IV 4 hours a day. For her 18th birthday, Laurel just wants to go to New York. Her parents would like nothing more than to make this trip possible for her.
In August 2013, Laurel spent about a week in the hospital and did IV meds at home for about 10 days. In October, she had two sinus surgeries. And in November, she was again hospitalized for about 10 days (got out the day before Thanksgiving) and still did IV meds at home until Christmas.
In January 2014, the real struggle began when she was hospitalized for 20 days with CMV virus. She ran 103 fever for about 2 weeks. She had pneumonia as a complication from the virus while in the hospital and the doctors did a bronchoscopy and she had another sinus surgery. She was hospitalized again, at the end of the month, for pain. Doctors thought it was a reaction to meds, so she was released after 2 nights when the pain went away.
In February, the pain returned so they no longer believed it was med related. She was Hospitalized again and consulted with neurologists and was sent home after 3 days with no answers.
At the beginning of March, Laurel met with her CF doctor and an infectious disease doctor to find out how to treat a micro bacterium that is growing in her left lung. The treatment involves 3 heavy duty antibiotics (2 IV and 1 inhaled) and they want to continue the treatment through August. She had a PICC line put in and began IV meds at home. The following week she ended up back in the hospital with a kidney stone. It was impacted and required a procedure to break the stone up with a laser and remove the pieces. Spent another 3 days in the hospital. The following week she had to go to the ER because her PICC line quit working due to a home health nurse that changed the dressing and did not put Heparin in the line. The same nurse let the PICC line fall out about an inch and pushed it back in (a big NO NO). Tuesday of the next week Laurel began running 103 and vomiting. She was readmitted to the hospital with the suspicion of a PICC line infection. She spent a week in the hospital this time. She was very ill and her white blood cells dropped to a dangerous level. They stopped one of her meds in case that was the cause. They also added an IV to help with nausea.
In April, Laurel began going to physical therapy twice a week to regain some strength.
In May, The doctors want to reintroduce the 3rd IV med. She will have to do blood work twice a week for the duration of the medication to make sure that her white cells don't drop dramatically again, and also to monitor her kidney function. On May 7th Laurel was hospitalized for 2 days for facial swelling. Not sure the cause – possibly the medication. They took her off of all her medications to see what would happen. (Thank goodness because the meds made her very ill and she lost a bunch of weight.) On May 19th Laurel began a new IV medication. We are currently waiting for labs to return before beginning the other IV medicine. Today as we gather this information Laurel is being readmitted to the hospital for an elevated heart rate. They have spoken to her doctor and are trying to get to the bottom of what is going on. At a minimum she will see her regular team of CF doctors, a rheumatologist, and a cardiologist. We continue to pray for answers and hope we get one soon.
Since January she has seen pulmonologists, urologist, nephrologist, infectious disease doctors, and neurologists, and with this current visit we can add to the list rheumatologist and cardiologist.
If you couldn't keep up with what our angel has gone through; she has been hospitalized 6 times since January 8th. That is 6 ER visits. Has been in the trauma room in the ER and put through shock protocol. Went through shock protocol a second time in a regular ER room because the trauma room wasn't available. Had an ambulance ride from West Campus to the Medical Center.
She has not been in school since Jan. 8. She has homebound teachers that come to the house to teach her.
But with every suffering child, there is a strong mother suffering with her. Her mom Sharon has missed over a month of work. Every day she has missed since December meant she got docked. She only received one pay check in March and one in April. In the past when needed, Sharon worked during the summer to make up some of the lost money. This summer she will be unable to work so that she can continue to take care of Laurel.
Laurel's lung functions continue to be lower than they have ever been in spite of months of treatment. We are praying that we will see results soon.
She continues to vomit even though she takes medicine for that and she feels fatigued much of the time. Even after all that she has been through, she continues to try to enjoy life to the fullest (in spite of her med schedule).
Help our family keep their hope in a better future, a better second part of the year, and making our angel's birthday wish come true. Thank you again for taking time to read this. Next time you pray, remember us. God bless you
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