...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 9 Its 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, turned 9 1/2/2012! Every single day Doctors, nurses, therapists and others are optimistically working toward her future, a future worth looking forward to!

At 9 years old, Madison understands everything you tell her, she has limited vocabulary that she is able to express and is still a bit hard to understand using broken language. We joke here at home that English is her second language, we just aren’t sure what her first one is! She is however, certain that it’s you who has the problem communicating, not her.

Because she has a huge hole in her left eardrum from infection, Madison is back in hearing aids full time. She has conductive hearing loss, but the new *hot pink hearing aids more than make up for anything she may have lost, if you ask her. Surgery to close the hole is very major and will be discussed this summer if it still hasn’t closed up on it’s own.

Maddy is still vocalizing at a 3-4 year old age level, but her language intellect is right on target. It was projected that she would be speaking in sentences and would be well understood by age 7 or 8. That seemed to be pretty much on target and was well projected. They did forget to mention that she thinks she is Taylor Swift…girl will sing for hours on end…never using a single word in the English language :)

She has not suffered from cyclic vomiting for almost 2 years now, but has started having migraine headaches. Seems like no matter the diagnosis, it comes with vomiting for Maddy. Right now we treat them as they occur (mostly from stress) but we will discuss a daily medicine if there doesn’t seem to be a reduction in them.

Believe it or not, she has started to learn how to meditate to reduce stress and it has been amazing! She is still unable to attend a public or private school of any kind due to medical issues so we have been homeschooling her for the past two years. Surprisingly, it has been a lot less stress for both of us to school as we please and when she feels up to it. There is a lot to be said for being able to let her rest when she is ill and not forcing any more stress on her. She is in the 2nd grade and is so far on target except for math.

This year she was again enrolled in ballet and tap and it was the highlight of her life, truly. Sadly, this will be her last year as her legs are getting worse and worse and the tighter they get, the less she can do. She is frustrated and that is not why we initially did this. We will stop after the recital in May and end on a good note.

Health wise, Madison’s heart has started to decline again after it 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 was expected to last 5-10 years. At our last visit 9 months ago, he said on paper that it looked like it was time again, but he would wait until she was clinically sick to proceed. Nothing like waiting for heart failure to kick in to be able to help her. At our recent visit, he reminded us it was a matter of when, and not “if” she would have another heart surgery. He said her pulmonary leak was “generous” but that they treat when it is “horrendous.” Hopefully, that will be a while from now.

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. She recently had her IV port surgically put into the other side of her chest for instant IV access, due to lack of useful veins. We are not doing the IVIG this winter because she finally showed better numbers in her antibodies, but we left the port just in case. She uses it for the several surgeries she has each year as well as for labs and admissions.

She still needs surgery in the future for her scoliosis, ear, teeth and her heart. 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.

Maddy can now read and write and loves to learn about science and geography. She tells me all the time she is going to Paris to meet her Prince! She seems to have serious natural talent in the area of art, like her daddy and they enjoy hours of painting together in the garage. (Make sure to check out her pictures on the photo gallery page!)

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. Common factors like Chicken pox, MRSA, measles, mumps even food poisoning could all be fatal to a child like her.

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 at age 9, we see a HUGE improvement! We are confident that the future holds good things for our daughter.

A Typical Week For Madison

MONDAY: Speech, Physical therapy and schooling TUESDAY: Aqua therapy and school WEDNESDAY: School and Occupational therapy THURSDAY: school and Ballet FRIDAY: School Saturday: Occupational 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