Oxygen/Albuterol toxicity

If you would have told me a year ago my son would be born with CDH, I wouldn't have believed you. If you would have told me id be fighting with doctors I would have said you were lying. If you had predicted that Liams birth as well as his first year would have put our family through trials and tribulations and that it was only the begining I would have told you to shut up. If you would have predicted all those things and I was sitting here now, Id ask you to give me the winning lotto numbers. I never thought this could happen or would happen. And I never thought Id be willing to record it for the whole world to read. Circumstance changes you. Its changed me to the very core of my being. Before I never would have argued with a doctor. Now it seems thats all I do. Im no longer the girl who avoids confrontation and keeps to herself. I am now the woman who isnt afraid to stick up for her child, even if it means yelling. Im still quiet and a people watcher, but that veil lifts when the need arrises. I state my complaints and frustrations. I am forever changed. They just lowered Liams oxygen from 1 litter to .75. I agreed to let them go down to a half a litter. I fought and fought with them. Liam is still desatting, why would you lower the oxygen? I had to do research to understand what they were saying about oxygen being toxic ( http://en.wikipedia.org/wiki/Oxygen_toxicity ) . Its toxic at high levels for extended periods of time. I get that now. What I dont get is weining while hes still desating. They actually told me that albuterol isnt toxic. I researched online and albuterol is meant to be a short term use drug because if used chronically it can make symptoms worse instead of better having a paradoxical effect. Not good because liam uses every 4 hours every day. ( http://www.livestrong.com/article/113319-albuterol-side-effects-children/ ). Albuterol toxicity includes tachycardia and flushing of the skin. The doctors claim that albuterol not being toxic is a lie. I personally can't wait for our pediatrician to Get back in the office tomarrow so I can catch him up on whats been going on. He doesnt even know liam is in the hospital because I didnt want to ruin his vacation. We also found out that Liam should never have been discharged on oxygen and trying to wein without a pulse ox monitor. She also doesnt want to discharge him until they can get us one. So please pray our insurance approves it because I have no clue what we're going to do if not. It seems like at every turn we get stuck between a rock and a hard place, never getting a break. If theyre refusing to pay for 8 tube extention and only doing 6 then I doubt theyll approve the monitor that we keep getting told he needs. They expect us just to be able to go out and buy these things but they dont understand tbe situation of having 2 unemployed parents trying provide for a family of 4. WIC stops giving formula the month Liam turns 1. As it is were not getting enough formula through them and I have no idea what were going to do for his formula then since he isnt eating by mouth but a few bites. If only we could stop all these hospital stays so I could stay home with Lanie and Liam and Justin could go back to work. This is being hit by circumstance. Some people never have to know what it means to struggle. Those who struggle, end up stronger in the long run. Our family wasnt even hit the hardest by CDH. There are other families out there whose marriages don't survive the destruction CDH causes. I pray for strength for families stuck in this tornado. Its all I can give for now. I see alot of parents here at the hospital. A mom sitting on a bench trying to feed two small children while a third is somewhere in the hospital sick. Another mom struggling to smile for her son on the playground while worrying for her baby. Others crying thinking theyre alone. I pray for then all. I dont know theyre situations but I do know how it feels to watch your kids be sick and in the hospital. No matter what their reaso for being here is, it still hurts. They only thing we can do is pray and stay strong for our kids. I dont know if ill ever get over the pain the last year has brought me. I dont know if ill be able to laugh about all this one day. I just pray we get through it with as little damage as possible. For now this is our lives, our rollercoastering tornado. On a lighter note, there is only 48 days until our little Liams first birthday! Its not just a milestone for us, its a huge event. Liam has survived so many odds. Its a true miracle. I was in labor from before easter to july 14 with this little man. It was painful and I thought id go crazy from pain and bedrest. I remenber it like it happened yesterday. Me sitting onvthe edge of the bed rocking myself and takinga deep breathes trying not to cry my eyes out. I can still feel the pain when I think about it. Boy was I happy when they said it was time. I dont think I could have gone another day. Every pain only secured the bond between liam and I making ig stronger. I love you little man. You already have us at your beaking call with one bat of those eye lashes and big eyes. Sent from Yahoo! Mail on Android