MICHAEL ~ 1-1/2 YEARS OLDRetrun to 22q Stories
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Michael was born on November 11th 2011. He was a full-term baby and weighed 6.5 lbs. they said he was healthy. Everything went well and we were sent home the very next day. Things were going fine until one day at about one month old, after his feeding Michael couldn't keep it down. He looked very weak and pale. I knew something was wrong. I rushed him to the nearest Emergency room. While there, Michael turned blue and stopped breathing. At his time they had a helicopter on its way to pick Michael up. I was in shock. When we arrived at the hospital, they told me Michael had severe breathing problems. After about 2 weeks in the NICU and a video swallow study, they noticed all the formula he was drinking was going into his lungs instead of his stomach. They diagnosed him with aspiration pneumonia. They gave him a feeding tube and a heart monitor and sent us home. Just one day after we got home, Michael looked pale again and he started retracting. I then rushed him over to the nearest Emergency room, where he had a 30 second seizure and stopped breathing again. This time they rush him by ambulance.
For a whole month doctors couldn't figure it out. Then after a genetics test (that he passed the first time) they diagnosed him with DiGeorge syndrome. Michael was very difficult to intubate both times. But now we knew what we had to do. We spent two months in the NICU before we were finally able to take him home. He came home having to take phenobarbital for seizures, pepcid for acid reflux, calcium, vitamins and needed occupational, physical, and speech therapy.
Michael is 1 1/2 yrs. old he has a feeding tube and can only eat food but still can't drink. Michael only weighs 16 lbs. and has trouble gaining weight. But he is off of all medication, and getting better with therapy and is a happy boy who loves music, dancing and eating. Michael is only behind on walking and talking. But overall is doing well. Doctors tell me he may need corrective surgery for his pallet in the near future but nothing to worry about.