A new “life”line

It is 8:35pm and we just brought Keyan back up to her room after her surgery to get a new broviac central line placed.  The surgery went well overall and due to an emergency surgery before ours, the anesthesiologist that has done all but one of her sedations was able to make it here and do this one also.  I am sure the day will come when he will be unable to be part of one of her procedures but I was thankful that it was not today.  There was some concern about whether or not that would be able to get good venous access but in the end, they were able to insert the catheter on the left side of her chest and tunnel it out at the center of her chest.  Strange, but functional.  At this point however if we can get the access we need, that is what we will do.  She is still sleeping from sedation in this picture, and I know it isn’t easy to look at , but this is her life and I really want to share the realities of it.  I am just thankful that this surgery is behind us!

As long as things stay stable tonight, there is no reason that we should not be able to go home.  Just the thought of it brings tears to my eyes.  I miss my husband, my kids, my parents, and even the dog!  I am exhausted from “sleeping” on my pull-out chair, have heard enough Barney and Dora to last a lifetime, and am totally sickened by cafeteria food.  Most of all, my heart yearns for some normalcy for Keyan.  Again I am amazed at how my outlook has changed just in the last 2 months.  I clearly remember my thoughts the night of May 19th after she had the first seizure, and my thoughts today are so vastly different.  I long to give her a different life than the one she leads in the hospital and am seeking out ways to give her the quality back into her days. 

As far as a second opinion, there are several people working on it, but for some reason, we are having problems getting Cincinnati to call the doctor back.  I feel better knowing that our GI doctor here understands the urgency and also wants her seen by someone in the next week…I just desperately hope that we can make that work.  It is all SOOO overwhelming, but I know that someway, somehow, all of the details will work out and it does me no good to stress about them right now (much easier said than done)!

As I end, she is still sleeping comfortably, her blood pressure is a little low, but nothing alarming, and I am overcome by too many emotions to speak of.  Thanks to everyone who has called, sent cards, sent gifts, visited, prayed, and just kept us in your thoughts.  Please continue to do so, I have a feeling this is just the beginning of some very difficult decisions!