Thursday, October 8, 2009
I smiled at mom today!!!!
Just wanted to post an update on Nicolas. He is home from Seattle and we are loving having him at home. The flight home was scary because his o2 sats dropped way into the 70's and we had to get oxygen from the flight attendants. Luckily that brought his levels back up but ever since we have been home he has needed the oxygen. We think maybe he misses being at sea level in seattle! He has times where he seems comfortable and content and other times he has crying fits and his 02 levels drop, he gets to where he can't breathe, and just when we think we should call 911 he quits and slowly becomes himself again. The doctors are thinking part of it may be his reflux. We have been told that he will most likely get a cold this winter or the flu and he will most likely not make it through that. Living everyday scared that this episode could be the one that is too much for his body to handle, is tough on all of us. We are all just trying to love little Nicolas as much as we can and hope that God will give us strength if he doesn't make it. I am so comforted to know that if he doesn't make it he will be in heaven and he will be in perfect healthy peace! He has a cousin in heaven who would be 21 today! We still pray that God will heal him and carry him through so we can watch him grow up. Please pray for him. Pray for lung capacity and that his airway would be open and strong. He keeps me super busy but I will try and post some pics when I get the time. Oh and yes, he smiled at me today and I was so happy that I started crying and i think i scared him cause a few seconds later he started to cry! oops!
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Hi Jenna. My name is Brooke. I found your blog through Kai and Chelsea's blog.
ReplyDeleteI too have a son with Dwarfism. He has SED.
I was in tears reading your post. I went though a lot of what you are going through. At 6 weeks we took our son home from Spokane Washington and had a similar experience on the airplane. They almost grounded the plane. Air-Med helicopter flew up and when we landed in Salt Lake City Utah there were ambulances and paramedics waiting. He was on oxygen for 5 months but is doing great now, except every winter when he gets sick. He will be three next month and he has had RSV every winter. Somehow he makes it through all his challenges. As I will pray your son will!
Doctors at cedar Sinai wrote in his radiology diagnosis report his SED was a type so severe he would not live through his first year of life. He is now a SED miracle and doctors can't believe how healthy he is.
They are incredible miracles in our lives. I believe my son chose to come this way. I think he sacrificed himself to teach his loved ones lessons....lessons we would never have learned with out him.
I will pray for your son! I am sorry for your pain and worry. That first year I was a mess. I pray God will carry you through this difficult time.
PS. My son also had much better oxygen levels when we were in eastern Washington, near Clarkston WA, Lewiston ID, which is at sea level.
Let me know if I can ever do anything for you!