Damien's Habitat...

20th September 2005

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September 20.
We finally made it!!! Friday afternoon we were allowed to bring Damien home and begin being a family at last.  It hasn't been easy, he still isn't 100% but it feels great to be here.  It was a fairly rushed decision but the doctors wanted us to be together.  The final prognosis for Damien is that they feel we have 12 months at the most, but considering just how sick he has been and how bad his heart has gotten, we probably have alot less with him, so being here is very special for us.  It's easy to see that Damien is happy to be back, he's alot more relaxed and sleeps so much better.  The frustrating thing for him is he wants to jump right back in where he left off, trying to crawl around and wanting to be so active.  Unfortunatly he doesn't have the strength or breath to get around like he used to.  He still has periods where he gets tired and starts to breathe hard, which is quite scary for us.  He is on restricted fluids and is only allowed to have 760 mls a day.  he is on about 6 different medications and our day starts at 5am with his first lot and ends at 11.30pm with his last, with about 2 hours between each dose so it's very full on.  He's very happy to be sleeping in his bed again(or more like our bed).  He is also extremely pleased to see his best pal Nicky again and vice versa, Nicky has been full of kisses for Damien.
Coming home has not been without it's dramas.  We arrived to find our phone had been disconnected while we were gone and it has taken four days to get it back on.  Also we went to have a shower to find the hot water service playing up.  Needless to say a plumber had to finally be called and we were blessed with hot water again.  It's hard to truly relax and enjoy being home cause we are constantly on our guard waiting for something to happen or go wrong.  Everytime he has a bit of difficulty breathing we start debating whether to take him back to hospital or wait and see how he goes.  So far he has gotten better after having a rest.  We have a nurse from the hospital come out to visit every 3 days to check his numbers and make sure he is going ok.  They are going to see if we can get a monitor to check his heart rate and oxygen levels if we get worried.  That will give us a little more peace of mind.
And so begins the next stage of our journey with our little angel.  We treasure every day we get to spend with him, and pray we still have many more to go....