mjarecki
We support the Childrens Interstitial Lung Disease
- Joined
- Sep 1, 2010
- Messages
- 92
Our son Michael, age 7, has been granted a wish through Make A Wish. Here's a little about Michael's story:
Michael was a normal 7 year old boy until February of 2010. He spent most of February and March sick with high fevers and a bad cough. We were told over those 2 months that he had strep, flu and pneumonia. He wasn't getting better. I kept taking him into the doctor every few days and they kept sending us back home. Finally on March 30th I had had it. He was still coughing, running a fever and was having a hard time breathing. He couldn't get up a flight of stairs withouht having to sit down and take a rest to catch his breath. This was just not normal. I am hyper sensitive to health issues because my mom is a lung transplant patient. She's had 2 transplants and suffers from a form of interstitial lung disease. At the doctor on the 30th they also noticed his rapid breathing and high heart rate. They thought it might be his heart so they sent us to the hospital for an echo and another chest x-ray (4th in 2 months). We did those and went home and as soon as we got home they told us to return to the hospital to do a CT of his chest. We went back and did that and later that night they said we needed to see the pulmonologist right away. The next day we went to meet the pulmonologist. He told us that Michael has Bronchiolitis Obliterans and Bronchiectasis. Bronchiolitis Obliterans is a form of chILD. chILD is Childrens Interstitial Lung Disease. There are several forms of chILD. chILD is very rare. Basically kids with chILD have lost lung function. Their lungs are like dry sponges, they don't contract correctly, which makes oxygen exchange difficult. Kids with chILD have a hard time fighting off disease and are often sick. The diseases of chILD are very rare and therefore any treatment is still in the experimental stages.
Michael contracted his Bronchiolitis Obliterans from an adneovirus. Since diagnosis Michael is now on oxygen at night, has a port and is receiving iv treatments of IVIG and high dose steroids, has a percussion vest and does several other treatments and medicines.
It's been a tough year so far. So when our pediatrician said he was referring Michael to Make A Wish we were so excited!
Michael thought long and hard about his wish and settled on Disney World. We were just there in 2009 and he and his younger brother had a great time. Our wish granters came in early September and we are still waiting for dates of our trip. We got notice that the trip was approved, but not scheduled yet. We are hoping to go sometime this fall.
I'll add more details as we get closer!
Michael was a normal 7 year old boy until February of 2010. He spent most of February and March sick with high fevers and a bad cough. We were told over those 2 months that he had strep, flu and pneumonia. He wasn't getting better. I kept taking him into the doctor every few days and they kept sending us back home. Finally on March 30th I had had it. He was still coughing, running a fever and was having a hard time breathing. He couldn't get up a flight of stairs withouht having to sit down and take a rest to catch his breath. This was just not normal. I am hyper sensitive to health issues because my mom is a lung transplant patient. She's had 2 transplants and suffers from a form of interstitial lung disease. At the doctor on the 30th they also noticed his rapid breathing and high heart rate. They thought it might be his heart so they sent us to the hospital for an echo and another chest x-ray (4th in 2 months). We did those and went home and as soon as we got home they told us to return to the hospital to do a CT of his chest. We went back and did that and later that night they said we needed to see the pulmonologist right away. The next day we went to meet the pulmonologist. He told us that Michael has Bronchiolitis Obliterans and Bronchiectasis. Bronchiolitis Obliterans is a form of chILD. chILD is Childrens Interstitial Lung Disease. There are several forms of chILD. chILD is very rare. Basically kids with chILD have lost lung function. Their lungs are like dry sponges, they don't contract correctly, which makes oxygen exchange difficult. Kids with chILD have a hard time fighting off disease and are often sick. The diseases of chILD are very rare and therefore any treatment is still in the experimental stages.
Michael contracted his Bronchiolitis Obliterans from an adneovirus. Since diagnosis Michael is now on oxygen at night, has a port and is receiving iv treatments of IVIG and high dose steroids, has a percussion vest and does several other treatments and medicines.
It's been a tough year so far. So when our pediatrician said he was referring Michael to Make A Wish we were so excited!
Michael thought long and hard about his wish and settled on Disney World. We were just there in 2009 and he and his younger brother had a great time. Our wish granters came in early September and we are still waiting for dates of our trip. We got notice that the trip was approved, but not scheduled yet. We are hoping to go sometime this fall.
I'll add more details as we get closer!
Welcome to the boards! Can't wait to read more about your special kiddo and follow along on your journey! 
