Andri’s Story

Site created on August 23, 2005

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Andri.

Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook. Take care, God Bless and Believe in Miracles!

 

Andri received a new heart on Saturday, December 17, 2005 at approximately 2AM (Friday night).

Andri was born April 1, 1996 in Atlanta (Snellville), GA and is our first-born child. At birth, we knew something was wrong when they took Andri away. Her joints were contracted and she had very stiff muscles with little movement. As she stayed in the hospital that first night we feared the worst while hoping for the best. Andri was later diagnosed with Arthrogryposis and most of her issues resolved through physical therapy and one hip surgery (6 mths). At 9 months she wasn't feeding and a subsequent doctor's visit and chest x-ray revealed that she was experiencing congestive heart failure (CHF) with severe mitral valve regurgitation (MVG). She stayed in the hospital for about a week and was given medications to improve her heart function. By week's end, the MVG had resolved to a very slight leak and Andri returned home on medication. We Believe in Miracles! When she was 2 she suffered another episode of CHF and her doctors in Seattle ordered a heart muscle biopsy. This muscle biopsy revealed her current condition - Restrictive Cardiomyopathy. She was also seen by a genetic specialist from Canada who diagnosed her with a very mild expression of Freeman Sheldon syndrome. For the next 6 years, Andri led a very normal life seeing the cardiologist about once a year and still taking some heart meds. When we moved to the SE Michigan area in 2001 her scoliosis (diagnosed in 2000) began to worsen and she was put in a back brace that she wore every day to prevent her curve from getting worse. By 2004, her curve had gone from 35% to over 60%. Her orthopedic doctor strongly recommended inserting what is known as a growth rod along her spine to prevent the curve from getting worse. It is not uncommon for kids with muscle disorders to have rapidly increasing curves that can go quickly to 90%. In June of 2004 she had back surgery wherein a stainless steel rod was screwed along side her entire spine. The rod serves as an internal brace to keep the curve form getting worse - but it is only temporary. The plan calls for every 6-9 months to go back in and increase the length of the rod to allow her back some growth. When she reaches puberty, the rod is removed and a full spinal fusion surgery is performed. After the rod insertion in June of 2004, Andri's heart took a turn for the worse and she had a hard time re-balancing her fluids. She remained in the hospital for 3 precarious weeks mainly due to her heart problems. Finally she was released with medication and she was pretty much back to normal. During this period of time, Andri's father, Brian, was also diagnosed with a rare muscle disease called Inclusion Body Myopathy (diagnosis later changed to Myofribrillar Myopathy). To date, the symptoms have been minor. Seeing a possible connection to Andri, a muscle biopsy was taken during her spine surgery and it was revealed that Andri most likely has Myofribrillar Myopathy too. This disease causes muscle weakness, contractures, scoliosis and cardiomyopathy. Arthrogryposis and Freeman Sheldon Syndrome now appear to be misdiagnoses. Andri had her first lengthening surgery in February of 2005 wherein her heart again had trouble re-balancing her fluids. She was in the hospital for 5 days this time. A later July 2005 heart check-up revealed that her heart had now built up very dangerous levels of pulmonary pressure (pulmonary hypertension) - a sign that the heart is weakening. If unchanged, this can permanently damage the pulmonary arteries precipitating the need for a new heart and lung. Andri was listed on the transplant list Friday, August 26th and received a new heart on December 17th. We got to the hospital at about 11AM but the actual surgery didn't start until about 2AM that night. It was a long night waiting for the results but one of the doctors periodically came in and gave us updates. The procedure went very well and according to plan. We got to see Andri sometime around 5AM. She was only in the hospital for 13 days and came home to a huge welcome party -the local TV news crews were there too! She continues to do well today. She now  takes meds three times a day, sees her cardiologist every 2 months,  and has periodic blood draws and periodoc heart cath's to make sure no rejection has settled in. So far so good. She went back to school in March of 2006 and has kept all of her grades up thanks to lots of special friends, teachers and tutors. Please pray for our family and the other family that donated their child's heart to Andri. Please become an organ donor, cherish life, your health and your families. God Bless all of you.

Newest Update

Journal entry by Angela Hill

Hi all, 

A few people have asked for an update on Andri. She is definitely on the upswing. She still has some discomfort and numbness but the sharp pains have gone away. Sleeping has become much better as well. We went to the physical medicine doctor this week and they took a look at her numbness in her knee and shin. They did a thorough exam of all her muscles. She has more difficulty with sitting than lying down as there is this “u-shaped” pain through her lower  back and hip area. She is having some difficulty with lifting her left leg but has been doing some stair walking at home to try to strengthen the leg. Physical medicine would like to see her do some physical therapy once we get clearance from the surgeon—hopefully at her June 7th appt.  She is taking gabapentin for nerve pain on a more regular basis per physical medicine.  Her rash has gone away and has left her with peeling skin in the areas of the rash. The  skin biopsy came back this week saying she has an aggressive allergic reaction to “something”—lol!! She is still on antibiotics for the bacterial infection for another month and seems just precautionary at this point.  She is still on iron pills( the insurance company denied the iron infusions) but the anemia is better. 
She is getting a long well and we are going to try driving this next week to see how her legs feel driving with the numbness and if her legs get easily fatigued-more from her muscle disorder from non-use than from the actual surgery. Her  plan is to go back to work June 12 if she is ready. I know her mind is ready but I want to make sure her body is ready physically to sit for 8 hours at her desk. I might make her pretend she is at work for a few days to see how it feels. Her company has been beyond amazing and it makes my heart happy that she is surrounded by a compassionate  family. Thank you Merril-Lynch!😄 She is going  to the Taylor Swift concert on June 9th in her wheelchair with her good friends so if she can do that, she should be able to go back to work! I just don’t want to be driving her to work—so that is our most important next step! 

This has been  an exhausting and emotional  journey but I hope Andri will be happy she did it a year from now. She said she can breathe better which is amazing and no more upper hardware pain. 
All of this has really reminded me of how strong she really is. I am so proud of her. I love this journal because Andri can reflect back to the moments when the  tears were flowing that things were never going to get better and she can see how far she has come.  You inspire me as your mom. ❤️
Thank you everyone again for all the prayers, the meals, and the encouraging texts. We are blessed with the greatest family and friends in our lives. ❤️

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