Many things happen before then and this page will give you a summary of all issues, test, sickness, hospital or doctors visits, etc we had between his birth and November 7th, 2011.
Jagger was born on September 14th, 2010. We were so excited to finally meet our little boy and he looked so perfect, 10 fingers, 10 toes, 2 eyes and he seemed so healthy. Of course, at that point, we had no idea of the terrible struggle that was happening at the cellular level in his body.
However, very early on he was not eating well nor gaining weight. He quickly fell behind on the growth charts. Jagger was also crying/whining a lot, sometimes 20 hours a day, and at first we thought it was Colic but now we know it was muscle/stomach pain due to his Mito.
His pediatrician was puzzled by his lack of growth and she started consulting other doctors in her practice, but no one knew what was going on with Jagger.
While checking for a routine heart murmur in December 2010, a cardiologist found that Jagger has Hypertrophic Cardiomyopathy. We were admitted the same day to the Cardiac unit at Children’s Hospital of Atlanta and the doctors ordered some genetic tests (especially Pompe disease). Test results came back all clear and we were allowed to go home the day before Christmas.
A few months later, Jagger was still not growing and his pediatrician was starting to get very worried about him especially since his head was not growing, and we were admitted to Children’s hospital once again for a full check-up to run many tests (including an MRI). Jagger was ordered an NG tube at that time and our neurologist mentioned the possibility of Mitochondrial disease (due to multi organ failures)
Because of the NG tube he stopped eating by mouth all together and was not supporting the NG tube very well. His vomiting episodes at this point increased from once a week to several times a day to vomiting with each feeding. This was obviously not a good solution.
In August 2011, one month shy of his first birthday, Jagger had a muscle biopsy performed (ordered by a Mito doc) and a G tube was placed.
While the tube helped to get more nutrition, Jagger was still not well and started to lose some of the few skills he gained such as holding objects in his hands, holding his head up, even supported sitting.
In November 2011, we received the results (based on the biopsy results) that Jagger had undetermined Mitochondrial disease.
A week later, we were admitted to the Children’s hospital again for GI issues. He continued screaming during feeds which caused us to stop feeds frequently. On the 4th day there, Jagger got severely dehydrated as he was screaming the entire day. At that time doctors had no clue why he was so agitated and in pain but they refused to give much pain medicine. After several hours of screaming and begging, he did receive one small dose of morphine which did nothing. He ultimately exhausted himself to the point he crashed and had to be intubated on the floor and transferred to the ICU. While in the ICU, we had a port placed in his chest for ease of future access needs and did another MRI. That MRI showed symmetrical lesions in the basal ganglia and we were giving the news that no parent wants to hear. Jagger has one of the worst most severe forms of mitochondrial diseases: Leigh Disease
Of course, it was an incredible shock to be told that your child, the love of your life, the center of our universe has a 2-5years life expectancy and there is nothing you can do about it. It is heartbreaking and frustrating and at times you feel like you are living in the twilight zone.
But we try to make the most of each days and enjoy every singles minutes we are lucky enough to spend with Jagger. And when we feel down or sad, all we have to do is look at him and his amazing smile to realize we are very lucky to be the parents of such an amazing kid!
Since Jagger’s birth until 12-31-12; (27 months old) Jagger had:
12 trips to the ER
11 hospital admission/stay (including 6 In ICU)
67 days in the hospital (including 30 days in ICU)
5 days on a ventilator
2 Surgeries (and that number is so low only because he can’t have any more anesthesia without a 50-50 risk of not making it)
85 days with a NG tube (feeding tube in his nose. We switch to a G tube directly in his stomach on August 17th 2011)
12 daily medications (plus some as needed for pain
33 doses of those medications he has to takes each day (plus some other medicines as needed for pain)