Home!!!

If nothing changes, we got the word this afternoon that we could be discharged tomorrow!  I can only hope that everything is smooth sailing thru the night and we can go home.  The last four days have been difficult on Keyan both physically and emotionally so it will be a relief to have it behind us.  The physicians and I have done a lot of testing, information gathering, getting to know each other, hashing things out, and sizing each other up.  Trust does not come inherently in situations like this, from either side, so we have had several discussions just feeling out our similarities and differences.  I am sure that they have seen my stubborn side, but hope that they see that the stubbornness only comes in advocating for my daughter.  I have learned a lot about myself in the last week. I have been pushed to my limits emotionally and have done hours of soul and heart searching.  This team needed to know where we are at as parents.  They needed to know that we will not give up on her, but we will not let them do do things just to have something to do….it is a fine line to understand and seeing that the social worker came into talk to me after I asked them not to advance her feeds, I am not sure they totally understand our take on things.  That is alright.  My number one priority is Keyan, not pleasing the doctors.  The GI doctor and I had a good discussion about our desires.  We did not come here to advance her feeds without reason.  We have done that for the last three years.  We know what it does to her and how it makes her feel.  Without a definitive change or understanding of what her body is doing, we will only be advancing her feed VERY slowly.  So, that leaves us at the point where we can go home.  We are making a few changes tonight with her TPN and are keeping our fingers crossed that it goes alright.  The results from most of the testing will not be back for 3-4 weeks so we will come back at that point to discuss what they have found.  The neurologists were in and asked a ton of questions and observed her for quite some time and they will also be conferring with our admitting doctor adding their thoughts to the mix.

This was a necessary step of exploration on the road to discovering the nuances of Keyan.  It was difficult, but good, and boy am I glad it is coming to an end.  I have learned that it is easy to advocate for Keyan when it is with people whom I know, but much harder to stand up to people that I don’t.  I have learned that despite that, I will do what is best for my daughter, putting aside my fears and placing her needs above all.  I have learned that my husband and I have a strength that only comes from trials.  It feels good to be united in thought with him because we are the ones that God has commissioned Keyan to.  I have faced the sight of my daughter “checking out” to preserve her soul and while that makes me really sad, I am also so proud of her coping techniques.  She is an amazing little girl who has challenged me and changed me into a better person. How lucky am I?