I thought I'd write a little more about the last few days here at the hospital. We have been blessed with a wonderful team of doctors and nurses in the pICU. It is a totally different experience from our last hospital stay and ER time the other night. We were back in touch with one of the doctors we really liked last time, Dr. Northrup, the geneticist. She is working closely with our doctor to make sure things go as we wish. Our attending physician, Dr. Erikson is awesome! He made calls yesterday and was able to get the EMG test done within a matter of hours. It was hard to hear that he does have SMA, but in our hearts we knew it was. The test just snapped that one string of hope that we were clinging to. We are now able to go forward with getting to take him home and enjoying him for as long as he can be with us. I have already promised him a trip to the zoo and as many visits to Target as he wants. He is my little shopping buddy.
We should be able to go home on Thursday. They are thinking he will get off the ventilator today because he is doing better breathing on his own. We will probably stay in pICU over the weekend so we can stay close to our doctor. Monday will be an upper GI and a gastric button will be put in so we can continue to feed him at home without dealing with the NG tube. It will be more portable and easier to take him out and do as many fun things as we can fit in each day. We will have one night of them feeding him, another night of us doing the feeds, then we should get to go home.
While here at the hospital we have had so many friends and family by our side. We have been brought lunches, coffee, breakfast, and lots of love. While we are very sad, we are happy to know that we have so much support to help hold us up. It will be difficult as things progress, but with everyone's help, we just might make it.