How it all began

Warning: this will be long.

I sit here, and I thank God for letting my baby girl (even though she is 17 now) still be here with us. When she was 4 years old she went in to have a routine surgery to have her tonsils and adenoids removed. They took her back and started doing her surgery and the anesthesiologist came out and told us we need to have her checked by her pediatrician because her blood pressure was a little elevated. They brought her out of surgery and she was pitiful. Her throat would not stop bleeding and it scared us to death. The nurse came in to discharge her and checked her blood pressure and it was 299/148! She looked at us and said, "I don't think this machine is right, do you?"  So, they send us home. Even with her still bleeding and bp extremely high. Well, she woke up the next morning covered in blood! I called the surgeon and the on call dr called me back and said to just watch her because sometimes that happens. Well, I didn't want to sit and watch her so off to the ER we went. The surgeon came in and was talking about going in and closing the artery in her throat so it would stop bleeding. He called specialists all over Rock Hill and nobody felt comfortable taking her on since she was so young and her bp was so high. They sent her by ambulance to Carolina's Medical Center in Charlotte, NC. Best thing that could have happened. I remember when I was in the ER with Jordan and the surgeon came in and I was just sitting and crying. He asked why I was crying and I told him because I was scared. I was scared of what was happening and what was going to happen. I remember I had on a WWJD (What Would Jesus Do) sweatshirt, and the surgeon looked and me and said, "You know I am a Christian?" I told him that I wasn't sure, but I though so because he had a cross on his necklace. He told me that he was going to send Jordan to Charlotte because if it was his child, that is where her would want her to be. Anyway, I believe God put that doctor there for a reason. He gave him the expertise to know how to care for MY child like she was his own. I rode in the ambulance with Jordan to Charlotte and when we got there they sent her straight to Pediatric Intensive Care (PICU). She was in PICU for 2 weeks before they got her blood pressure down enough to be moved to the regular children's floor. I am so glad that she was sent there. She has had the BEST doctor talking care of her. The doctor did tell us that it was a good thing that they didn't close the artery in her throat because if they did, with her bp so high, Jordan would have probably had a stroke and died. I remember being in the PICU with Jordan with IVs in her arms, her feet and then her leg. I remember thinking to myself, she is 4! She shouldn't be going through this. Anyway, they did a renal angiogram to check her kidneys and found that she has Fibromuscular Dysplasia or FMD. FMD causes narrowing in the arteries, usually in the kidneys, but can also be found in the brain, neck, arms, legs and abdomen. Well, Jordan has it in her arteries leading to her kidneys and also in  her mesenteric and celiac arteries of the intestines. When she was sent to CMC, we had no idea that she would be there for 2 months. While she was there she had renal angioplasty to open up some of the arteries leading to her kidneys. She was on so many blood pressure medications. Then, she ended up having severe stomach pains after she would eat. Come to find out, she had 2 ulcers in her stomach. At 4 years old she had ulcers! One the size of a half dollar coin. I remember my husband sitting up with her and just rocking her to make the pain go away. I came home one day and when I went back to the hospital Billy told me that Jordan had been singing Jesus Loves Me. He said she stopped singing and looked over at him and said, "God is going to heal me." Remember, she was 4! And she knew even then that we serve an awesome God. Well, her blood pressure was finally under control so we got to come home. Then we were back and forth with hospital stays because of dehydration. She would eat, it would hurt so she would stop. Every two weeks or so we were back at CMC because she was dehydrated. It was a very stressful time, but we were at the best place. She would go to the kidney doctor every 3 months to get monitored and have labs. She got to doing so well, that they moved it to every 4 months, then 6 months. She seemed to be doing so well. From 2001 after they got her bp controlled until 2013 she has had stable labs and blood pressure readings. Well, on Sept. 11th 2013 we got a call we never expected. It was the kidney doctor and she asked if I was sitting down. I told her no, but I guess I better go sit down. She said that last year around the same time (Sept.) Jordan's kidney function was 74%. At her last check up, they did labs to check kidney function and it shows that her kidney function is 26%. In just a year she lost that much kidney function. She suggested that we get Jordan added to the kidney transplant list. She said it is not urgent right now, but she wanted to get her added to the list before she turned 18 (in Aug. 2014) so she would have time already on the list. She said it could be a year from now or five years from now but we just don't know. It all depends on how stable her labs are and if she starts showing any symptoms. She said you can live with just 5% kidney function as long as labs stay stable. So, Dr. Massengill set us up with the transplant team at Levine Children's Hospital. We met with surgeons, social workers, nutritionist and anybody else you can think of. Now, we have another hurdle to overcome. The surgeon says Jordan needs to lose some weight before they will even consider doing a transplant because of all the risks. Ok, just another thought before I finish. We as a family know that we serve a God bigger than any problem we can face. We have faith and are believing that Jordan can and will be healed. Our idea of a healing doesn't include a kidney transplant, but if His does, we will accept that. Jordan has more faith that just about any adult that I know, much less a teenager. I am so proud of the young lady she has become despite all that she has been through for the past 13 years. It seems like she lost most of her childhood because of all the dr visits and hospital stays, but I am glad that God chose me to be her mom and go through all of it with her. I know this is long, and I thank you all for reading if you finished this. Please be in prayer for Jordan and our family while we continue on this "Journey".

-- Emily


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