6 Months

Well I am back after my recent leave of absences!  The last month has been long and busy.  It's hard to believe it has been a month since we were faced with a change of plans.  If all went as planned Mark would have been in transplant today.  How much I wish that was true, but it's not and it's time to move forward.  I guess I didn't realize that I was hit with a bout of depression over the last couple weeks.  It was brought to my attention by someone so dear to me.  At that moment it kicked me in gear again.  I had to pick up the pieces make decision and move forward.  Chris and I took a little bit of time to decide what would be best for us.  Realizing that we were looking at transplant not happening in the near future with a living donor, we have decided to list him on the deceased donor list.  In the time we would get another living donor cleared, the monthly transplant slots would most likely be booked well into the fall.  With Mark's blood type and his priority on the list, we will be looking at a wait of anywhere as soon as 12 hours up to 100 days!  Although this was a hard choice to make, it was made with ease after some major conversation with Mark's team at Children's.  We were not using a living blood relative donor to begin with.  When using a relative donor that is when they say you see a little more longevity out of the kidney...So in the case that it is a non relative donor, the team seem to think that it would almost be a lateral move.  There was also the other weighing factor that Mark will most likely need multiple transplants in his life.  Listing him while he is under the age of 18 gives him priority.  This gives us hopes of having to rely on living donors later down the road.
What will happen next...We wait to be activated on the transplant list.  He has his clearance for transplant...almost..yes almost :(  We are currently waiting on some blood levels to stabilize then he will officially be activated.  We also had to have ANOTHER catheter replacement last Tuesday!  This was a bit unexpected.  The catheter had been acting up a bit, but after all the line studies a couple moths ago they were saying there would be no replacement.  Everything was running as it should..But then we had the infection in the line.  It also appeared to look as if there was so infection around the outside of the catheter.  Although they never said it was infected the had been applying a topical antibiotic to the area.  The second cath did not heal as nice as the first one.  Finally it was noticeable that the cuff was exposed (the top of the cath that should be in the body) once this was determined, it had to be removed.  It could fall out at any point if it was not removed...that was scary enough for me!  So I guess I'm happy to say we are the proud owner of a third catheter in six months!  We have only had a week of treatment with it and it seems to be running well...knock on wood!
We have been busy...I am hoping that it all works out and we will be activated soon and receive a call quickly!  I have say I am happy to be back behind the laptop.  I try not to be so down in the dumps but the last month has been hard on me.