The Best Part About Today is...

...her daddy's on his way! I love knowing that every night he can come on over and play with this little pickle. What a blessing it is to be close enough to home to make the commute over each day.

Its been a long day. A long day of decision making and at the end of it we still don't know what we are going to do. Trying to choose the best treatment, the best option, and the best long term choice for Ashley Kate and this whole blood clot thing is wearing on me. I truly and honestly don't know what we should do for her.

The temporary line has to come out. We all know that. Remaining on a heparin drip for the next 3 months is not an option. We must switch over to Lovenox(sp?) shots(2 times a day for 3 months which is 90 days equals 180 shots. Ouch!) or to Cumidin to treat her blood issue. Which is safest? What is best for her? I have no idea. The main problem we are having in making this decision is that drawing blood from Ashley Kate's 1 accesible vein is a nightmare and it will not hold up to weekly draws. It has proven that to us. So, regardless of which medication we choose (every one here is leaning toward Cumidin and everyone in Omaha was leaning toward Lovenox) she must have her blood clotting factors checked weekly leaving that 1 vein in a bad place not to mention the stress it puts Ash through emotionally. The lovenox is a shot. 2 per day. I have been told they sting like fire and leave nasty little bruises. I have also been told the needle is small and only goes under the skin not to the muscle. The stick is not that bad, but the burn from the medicine is. The emotional turmoil it is going to put Ashley Kate and her mommy through is not going to be pretty. The Cumidin is a pill that will be crushed and sent into her J-tube. Not so bad, but getting the right amount of drug in her system can be tricky leading to more lab sticks more often, so in light of that knowledge the team here would like us allow them to place a port or a broviac line for the frequent draws. Whats so wrong with that? We all know that Ash has spent the majority of her life with a central line. We are comfortable caring for it, dressing it, and drawing blood from it. The problem is that it puts her at risk for a line infection, which always has the potential of being life threatining. She has only ever had one of them, but it wasn't a good thing. Pretty dangerous. The next issue with placing the line is that she will have to go into surgery and with the anti-coagulants (heparin)that have been running since Thursday she is at risk for bleeding with no ability to clot off during the procedure. What in the world should we do? I just don't know and this is the part of parenting Ashley that is the most difficult. Loving her is easy, taking care of her has actually become a "piece of cake", deciding when and what and where to intervene for her medically is hard and it only gets harder and more complex the older she gets.

Dave and I have to decide tonight what direction we would like to go. Knowing that she is only 2 and 1/2 and we are losing veinous access is a frightening place to be in. Without access to her veins we are left with no options for treatment if it ever comes to that. Pretty intimidating! Currently they are holding a place for her in the OR tomorrow afternoon and they plan on turning her feeds off at 4am in hopes that we will decide an attempt at a line placement. Our question is this, "Is that actually the best choice for Ash overall?" or should we endure the shots, dig for veins, and hope if we choose that we won't have to give in and place a line anyway once her "good" vein gives up.

I can't ponder this anymore. I'm just thankful I'm not on my own tonight with a huge decision looming over my head. We're a team and he's on his way to help make the decision, but mostly he's on his way to scoop up a baby gherkin who still has high hopes of becoming a mighty dill someday.