In House, where it was always some crazy unheard of disease (and never lupus), I remember that infection was often considered to be the problem, at first, but the trap they always fell into was they gave the patient antibiotics and he got better. Ergo, infection. I mention this because I feel, at the moment, we are using the medicine to try and help with the diagnosis. I am sure that is pretty common, but it's hard for us to wait and see if we are on the right path.
However, today, Wednesday, was actually a little less about the boys and a bit more about how the hospital is taking care of Aly and me. We have been struggling a little since the move with communicating with the health care team. Is it me? Is it you? Is it us? Is it them? Today, a nurse, who was supposed to have the day off, was asked to work to cover for someone. She said yes and she was assigned both of our boys. I wrote once before that we hear some people believe things happen for a reason. At the end of a very difficult day today, I said to this nurse (with a tear in my eye) that I think that she was sent to save us. She seemed to take it well but I intend to try and explain it to her a little better one day because I know we will see her again. As well as being a nurse with great skills and knowledge, she communicated with us in a way that we hadn't felt since we moved to the tower. Today could have been terrible. It might still be, because the boys are really sick. However, the universe aligned so that someone took today off and our nurse became our nurse and that nurse was exactly the nurse we needed today and for that, (and I rarely speak for Aly) we are very grateful.
Of all the posts I have written, this is the one that I know you all know the author. A lot happened today and you all need an Aly post with more details. Instead you got...
(D)
D I am constantly amazed by your ability to find light in the darkest of places. Worrying wishing praying hard for all of you. Loving hard on all of you. Hoping a needed break comes today for the boys. Xo
ReplyDeleteI know you don't know me at all. My baby wasn't even close to being as sick as C & H, but I do know how scary the NICU is and the moving to different floors and how important the communication is. We were nervous wrecks almost every day of our nearly 7 week stay. I wish so much that I could say "Don't worry, everything's gonna be alright" oh if only words just 'worked' that way. Just know that in a little city south of Nashville, TN, you have a twitter friend that is praying and thinking about your baby boys & you & A every single day.
ReplyDelete