...On day 4 of recovery Madison ran a fever and was labeled as “severely septic” with both a lung and blood infection. We were told that the 3 antibiotics were not helping and her lungs were too poor from being on heart-lung by pass to help. Her lungs collapsed several times and her body swelled to maximum capacity with infection. She was having blood and platelet infusion numerous times per day and soon even had adverse reactions to that. She was in a medically induced coma, on the ventilator and taking maximum dosage of narcotics for 3 months. At times even the ventilator couldn’t help and she was put on an oscillator that pushed 300-350 tiny breaths into her lungs per minute! She wore earmuffs because it sounded like a jackhammer.

One amazing morning Madison decided she had enough and she started to get better. Her blood and lungs were taking longer to prove positive for infection and they were letting her wake up. Within 2 weeks we were put on the “cardiac step down unit”. It was that first day that they decided to let her eat for the first time in months. I fed her several ounces from a bottle and the rest went down an NG tube in her nose. Within minutes Madison turned blue and wasn’t moving.  She was resuscitated only to stop breathing several more times. We went back to ICU after only one day.  Five days later she under went stomach & esophagus surgery to reconstruct the damage that the ventilator did. It had blown her esophagus wide open and she was aspirating even her own saliva. Her stomach was tied off so that nothing could come up and a G-tube was put into her tummy so that we could feed her directly into her stomach with a feeding pump...We are still feeding that way today.

She remains on a host of prescription drugs to keep her blood pressure down, her kidney stones controlled, to aid in digestion, to keep fluid off her heart and help lung disease. She still does not eat or drink anything by mouth. Madison is averaging 1/2 the year, every year, admitted to Egleston Children’s hospital fighting blood and lung infections. She is very petite (not even on the growth chart) but continues to gain weight slowly. She goes to speech, physical, occupational therapy and special education several times per week. We see about 3 specialists per week (and that’s if nothing is wrong) and keep working toward our goals.

MADISON...NOW!

Since Madison is now 5 and 1/2 years old, I decided it was time to start looking toward her future.  Certainly her first few months of life were most important, but where she has been since then is most inspiring and informative and where she is yet to go is exciting and hopeful.  The child that we were told wouldn’t live her first 30 days, the child that we were told was going to die at 3 months old, the child that has had CPR more times than I can count…That same child, will turn 6 January 2, 2009!  Every single day Doctors, nurses, therapists and others are optimistically working toward her future, a future worth looking forward to!

At 5 years old, Madison understands everything you tell her, she has a very small vocabulary and is still very hard to understand. She has gotten ear tubes and sometimes uses hearing aids because of her conductive hearing loss, and now can vocalize at a 24-month age level. She has had her sub-mucous cleft palate partially reconstructed, and has started to taste different foods and is drinking pretty well from a cup. She is still 100% g-tube fed at night to make sure she gets all that she needs. These are HUGE strides!

She uses sign language to communicate and will sign whole sentences at a time when we cant understand what she is trying to say. Although she makes efforts to speak, it is very limited and pretty hard to understand. She is however completely convinced that she can sing :) It is projected that she will speak sentences and will be well understood by age 7 or 8.

She periodically suffers from cyclic vomiting for reasons unknown. We have tried almost everything and have only come to the conclusion that we admit her to the hospital and knock her out to limit the suffering. These episodes seem to be caused by stress and are less and less frequent every year. After breaking out in hives daily, she is now on Zoloft to decrease her anxiety. She is enrolled in a special needs pre-K, but she will be home/hospital bound for the next year because common kid infections can be life threatening to her.

In Fall 2008 she will attend a special needs pre-school class (with only 3 other kids) for 2 days a week. In the winter she will be homebound again until after Spring. This year she was enrolled in ballet and tap and it was the highlight of her life, truly. Madison has already started to show signs of ADD (no H), OCD and of being impulsive. She has no cognitive understanding of danger and will do anything. She will try to jump off the 10ft play fort, try to ‘catch’ cars that drive by, and touch a hot oven even though we tell her it is hot.

She has to be watched at all times, and you always have to expect the unexpected. To keep her from running off (no concept of getting lost) and to help her from getting too tired, we have a "convaid stroller". It pretty much looks like a wheel chair minus the big wheels. She points to strollers and says "baby" so it was time to get her out of one and into something safer and more age appropriate. She loves her new “car” as she calls it and is much more comfortable. Now that she is bigger it has been a God send for my back!

Health wise, Madison’s heart had started to decline and was repaired again December 11th, 2006. She had her pulmonary valve replaced during her second open-heart surgery in 4 years. The surgery was a complete success and the valve is expected to last 5-10 years.

Sadly, it has already started to calcify, making me believe that it will be closer to 5 years instead of 10. She still has an IV port surgically put into her chest wall for instant IV access, due to lack of useful veins, and she was getting immunoglobin infusions here at home every week to help with her T-cell count and sometimes for IV antibiotics or TPN at home. This January she went into sudden renal failure from IV antibiotics and spent time in the ICU. Luckily, she recovered well.

She still needs surgery in the future for her eyes, hernias, scoliosis and possibly another palate operation at a later date. Maddy is still considered failure to thrive because she doesn’t gain weight. As she ages, we are starting to see some of the other anomalies coming to a head. She has been tested for autoimmune disease numerous times, and although her numbers come out okay, she is very symptomatic of it. Most mornings she has a very noticeable limp and suffers a lot from leg pain.

Our petite, little Madison lies down and throws the most beautiful temper tantrums you have ever seen! She is your ‘typical’ kid laying on the floor kicking and screaming. I cry tears of joy when I see it; amazed that someone who spent month after month on a ventilator has the lung power to scream and a heart, that had 4 defects, strong enough to handle it. She bites, pinches, hits, hugs and kisses. Looking from the outside, you’d never in a million years know there was a thing wrong with her on a good day. She knows her ABC’s, can count to 15, can read some sight words and recognizes all of our written names and can even write her own name.

Being immune-compromised and having congenital heart disease are what we call invisible disabilities. We hope and pray that good days soon start to out number the bad days and that every obstacle that comes along we are able to conquer. DiGeorge syndrome is not fatal, but the diseases and infections that come along with it can be. Just this past year she has had several potential fatal infections such as RSV, pneumonia, and pseudonomis, bad enough for a normal child but sometimes Madison has virtually no immune system and severely damaged lungs and other organs. Chicken pox, MRSA, measles, mumps even food poisoning could all be fatal.

We have been incredibly lucky thus far and thank God for every single minute we are given with our kids. Madison has lost a lot of DiGeorge buddies along the way and their memory only inspires us to love her more. If you can survive until your first birthday there is a chance that your DiGeorge child might do okay, the next marker for Improvement is age 5…and we do see an improvement! We are confident that the future holds good things for our daughter.

A Typical Week For Madison

MONDAY: Speech and occupational therapy TUESDAY: School WEDNESDAY: School THURSDAY: Physical therapy and Ballet FRIDAY: School and aqua therapy Then add in Doctor appointments!

 

All donations go directly to Madison's fund. You may also choose to send a donation by mail to: Madison Faith c/o MCS P.O. Box 670374 Marietta, Georgia USA 30062