Scare

It is amazing how quickly one's body gets past exhaustion and you go in to robotic mode. The last week has been difficult. Last wednesday Lior was admitted to hospital - We had continous flem on the chest, and antibiotics and nebulising and he just would not stop crying - we had to run a whole lot of tests to try and find out exactly what was wrong. On Thursday we got the results that he has a virus in the lungs which is attacking the white blood cells and that his lungs are black ( I nearly had heart failure when the doc told us that) - hence the reason the antibotics per mouth or per tube have not been working. - this is due to his little heart not allowing enough circulation to the lungs and having pockets of air that are stuck in the lungs and cant come out and the heart being what the doctors would call "displaced". Unfoturnately there is nothing we can do to rectify this - this is all due to the syndrome. After 8 days of intravenous antibiotics and nebulsiing my poor boy every six hours with adrenailine and twice a day with pulmicort, and having physio and only getting into bed at 2am and waking at 4am, we are finally home from the hospital. I think Lior is happy to be home as well, he was just entertaining the girls all day yesterday and "slept like a baby" last night - we both really needed it, and now it feels like we have had too much sleep and totally exhausted from that. I cant say I ever want a repeat of the last week - its not the fact of being in hospital or anything like that, the scary thing is that any little virus, cold or anything similar could take my little boy away from us. The last week has definately taken its toll on Lior's daddy - not having either myself or Lior at home for the last 8 days has made it difficult for him, not the fact that we werent there, but the thought of how silent and sullen the house will be without our little boy in our lives. Now we need to carry on being positive and we are happy to be home and daddy and the girls are happy to have us home.
I met another lady at the hospital - she was in the room next door to us - yes we were lucky enough, or the doctor was kind enough to arrange a private room - her little boy is now 8 months old, he has been in and out of hospital for the last few months. They know he has muscular distrophy ..... how ever you spell that - and suspected cerebal paulsy - he is just the most gorgeous little boy, red hair, huge blue eyes and just full of life. On Friday last week they were discharged and re admitted on Tuesday night, it now turns out that the blood tests indicate that he has a virus called SMA and will probably not live to see his second birthday. Mommy my heart goes out to you, for once I can say I know how you feel. We at least knew before and chose our path, you have only just found out and your path has been chosen for you. Be positive and cherish every moment that you have, the good and the bad, this is what will help you stay strong.
Lior is back home and we cant tell you how lovely it is to be home and in our own environment and to know that we have a little more time with our boy. Love you my angel !! I also just want to thank all my friends and loved ones and especially my colleagues who have been so full of love and support and been a huge shoulder to cry on !!