It has been one of those weeks already, and it's only Tuesday. If I'm being completely honest, it's been one of those years...
It's possible that I have too much to do in a day...just saying.
After getting everybody off to school this morning I had the monumental task of packing up the things Lucy and I are going to need to survive for the next few days while we are in the hospital. Notice how I wrote a few days, I am being optimistic here :). I think the only thing I forgot to bring was food for me. Yep, I left the bag with my lunch and then some sitting right on the counter in our kitchen, hence the reason for my not eating until 3:45pm. It's alright, I promised Lucy a dinner date in the cafeteria tonight, that's how much I love her :). One grilled cheese on 12 grain bread for me and one french fry for Lucy. She doesn't eat the fry, it's so that she can use it to lick the teeniest tiniest bit of ketchup, if she is feeling up to it. More often than not she just likes to hold the fry and feel like she is "eating" dinner too. It's the little things in life :).
Lucy is going to be transported tomorrow morning from our home hospital down to Johns Hopkins, again, to have another stent placed inside of her common bile duct. She is scheduled for this to happen at around 2pm for all of you prayer warriors out there. This time this will truly be a permanent stent, the plan is to keep this stent in for the rest of Lucy's life.
This decision was really not a difficult one for us to make.
Without a stent she is miserable, with a stent she is more comfortable. It's really that simple.
Above all we want our girl to be comfortable! Of course we do, all parents want their child to be comfortable, but saying we are choosing comfort in this situation means that we are choosing comfort no matter what the circumstance. We are choosing to accept all of the consequences that accompany this decision - infection, possible rupture of her bile duct, pancreatitis, the stent becoming embedded in the wall of the bile duct, sepsis...These are all very real possibilities, but when compared to Lucy living the rest of her life in pain, this was not as difficult of a decision as you might think.
Do we wish that Lucy's circumstances were different, absolutely!
How we wish we could fix this and so many of the other problems for Lucy, sadly that is just not our reality.
Fixing Lucy's bile duct issues will not fix Lucy, her mitochondrial disease has reeked havoc on too many of her major organ systems for us to even consider putting her through a 20 plus hour surgery. Fixing one failing organ and replacing it with another failing organ is not going to fix our girl. This is where Drew and I and our medical team have had to come together and discuss the really tough stuff of life. Just because we can doesn't mean we should, that has been the gist of the conversations that we have had with our team, in addition to discussing what we as her parents ultimately want for Lucy. Our goal has always been and continues to be to give Lucy the BEST longest life. We are hoping and praying for Lucy to have as many good days as possible, which is why we believe that stenting her is the right thing to do.