Wednesday, July 6, 2011

It's complicated

This inpatient stay, that is.  Keegan's port is still leaking.  It's rather disgusting actually.  We rested it Monday.  Tuesday, surgery ran a dye study that showed the port is in tact (surprise), and they don't know what else to do.  We had to access the port for the dye study, so we left that needle in and decided to run his TPN through it again last night to see what would happen.  Of course, there was drainage in the dressing again by morning.  When his TPN and IV meds were done, we pulled that needle.  The skin was already yellow, swollen, and fluid literally seeped out of the needle site.  Awful after only 16 hours of access.

And yet, we still don't have a plan as to what to do from here.  The attending physician on the floor has tested my patience to no end.  My frustration hit a completely new height this morning.  I've heard, "I don't know...what do you want to do?" WAY too many times the last few days.  In order to keep my sanity, I had to officially delegate all decisions/arguments/consults to Gray today.  (I guess that's my anniversary present to you, honey.  I love you!)  In this doctor's endless finger-pointing cycle, he wants to ask our surgeon to come consult one more time in the morning before we put a PICC line in to give the port rest.  I don't think our surgeon will know what to do, and that is not his job!  He puts them in, not manages them.

There is obviously too much swelling and fluid around this port to allow it to work properly at this moment.  It needs to be rested for at least a week or two to allow all that to go down and be reabsorbed by Keegan's body.  However, Keegan gets all his nutrition from TPN through a central line, so he needs a PICC line in the meantime.  We frankly don't see the point in putting it off any longer.  Get it in, and let us go home!  All the nurses we have consulted from GI to hem/onc to transplant are in agreement with it.  As is usual, the doctor isn't listening to them or us.

We accessed the port just now once again with a longer needle because we needed some way to run his TPN tonight.  To make up for the swelling and try to prevent any in-and-out from a loose, shorter needle, we went with the next size up.  The longer needle sits up so high that we had to pad it with a biopatch.  The patch will blow up like a marshmallow with any drainage, so it should make it quite clear that the port is leaking.  That's fine for tonight, but why waste time by not going ahead with scheduling the PICC placement?  I will reach my limit if we are sitting here Monday morning because of a leaky port!  If we don't have a plan or haven't seen surgery by mid-day tomorrow, you can bet I will make sure he is on the PICC schedule as soon as possible.

While we are here tomorrow, Keegan will have his echo.  We are praying for at least stability in his heart function.  I really don't want to end the day in the cath lab.  Keegan will also have his first appointment with a play therapist.  She will start working with Keegan weekly, providing him with an outlet to process all that he is dealing with medically and emotionally.  I'm very excited about this, as his frustration has peaked the worse he has felt.  I'm also looking forward to Audrey working with play therapy as she gets older, allowing her to constructively process the emotions of all this.

Two more things to wrap up this post:

  • We are still collecting hairbows to donate to the hospital in honor of Audrey's first birthday.  We have been amazed at the number of bows y'all have donated so far.  Thank you so much to each and every one of you.  I've started working on getting them all packaged up for delivery, but I probably won't finish it until we are back home.  So, if you would like to donate and haven't yet, we would love to add to the stash!  
  • And lastly, today is our 9th wedding anniversary!  So, happy anniversary to the man I'm proud and lucky to call my husband.  I knew 14 years ago that I wanted to spend the rest of my life with you.  Nine years ago, we pledged to be true to each other in sickness and in health.  Who would have thought it meant this life?  I couldn't imagine facing each day without you, honey.  I love you more than words can say.  Happy Anniversary, Gray!

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