Since Grant has been home

Grant did come home on oxygen 1/4 of a liter and a heart/apnea monitor due to his reflux. Not much happened between the day he got home and the middle of September except for dr appts and I had to stop bfing because he was not gaining. September 20, 2010 he had an appt with the special care clinic down at childrens mercy and he was breathing 80 per min and they did an xray and realized he had a mildly enlarged heart, he was also swollen and they couldn't hear the heart murmur. They gave him a lazik and gave him a prescription of a lazik to take at home twice a day and come back the next day. Next day, same thing so they admitted him to the hospital and come to find out he not only had a pda but also had pulmonary stenosis (narrowing of the valve from the heart to the lungs) and fluid on the lungs. He was there from Tuesday September 21, to Saturday September 25. Then come Sunday September 26 I was so tired and kept asking for my husbands help and he wouldn't get up. I went to give the baby his medicine and realized I had just given him 10 times the amount he needed and so we rushed him down to the hospital and they keep him for observation for 24 hours. Needless to say we got rid of those syringes (the big ones). Fastfoward to that same Friday October 1st he was vomiting every where and I decided to take him to urgent care well its a good damn thing I did because he had fluid on his lungs again and they said the way he was breathing with in a couple hours we could have lost him. He was there till that Sunday or Monday trying to get it resolved for the last time. He has had concerns with his muscles, at one time they were hypertonic and now they are leaning more towards hypotonic. He has had trouble eating and just today found out he had been aspirating all this time and so they are thicking his liguids. Last time he was at the dr he weighed 16 lbs 1 oz. We go back next Tuesday to see if we can get him off the oxygen and I so hope so. What I wouldnt do to be able to be able to pick my baby up without having to worry about getting his oxygen and monitor. Its frustrating but yet very rewarding. It has changed my life for the better. I know now that I want to work with special needs kids and when the time is right want to adopt one since I am physically done having kids of my own. That breaks my heart everyday but God wanted it that way.