I'm a little teapot......

If I could have placed bets on how today would have went, I wonder if I would have bet on the original plan, or the outcome of the day. With how things have been lately, I probably would have hedged my bets and went with the outcome of the day.

I woke up and hit the ground running, which is a bad omen to me, I am usually ahead and have the car packed the night before, but I felt like I had a million things left to do, and was still running through check lists as I was dropping Elaina off at school. Chris arrived to the hospital way ahead of me, which is not something that happens, I just felt like I couldn't catch up. I finally got there, we got checked in, taken up, and settled in. That was the beginning of the end. They asked us when was the last time she took her coumadin. We told them the night before, as we were never instructed to stop it (nor were we ever told to do so during her first cath either, but that is neither her nor there.). Dr. G said, if she is above 2.5 she would be a risk and we would not be able to proceed. I laughed and said, "Of course, we won't be able to." I understand the risk, and I would never put my daughter at that risk, so please don't think I am mad at the fact that, we didn't do cath today for that reason.  

I quickly shot off a text to the surgeon's PA to let her know what we were just told and ask why we were not informed of this. She said she would come down to talk to us. After about an hour of waiting, labs came back, and sure enough Lily's INR was 2.8, and was she was at risk or bleeding out in cath lab. They said we would have to reschedule for a time when we could stop her meds 2 days in advance like cath lab advises. I saw red....I lost it...Not screaming unglued lost it, but a dignified you have messed with me for the last time, lost it. 

We were in on Monday for pre-op testing, only to be told we wouldn't be having surgery but a cath, never once were we told to stop her meds. Cath lab didn't call to confirm until 4 o'clock pm yesterday, that Lily was indeed down for a cath, but never did they mention for her to stop her meds, but even then it wouldn't have been enough time. I could have done more by tweaking her diet, then stopping her meds, if we just would have been made aware. BUT NO ONE TOLD US!! So that was the beginning of it, the communication, or lack there or, how no one tells us anything. How I can call and leave a message, and wait the allotted 24-48 hour time they ask for, for you to wait to hear back from them, only never to hear anything back. So I rinse and repeat, until I leave a very pointed message about how I haven't received a call back, and only then, does my phone ring 15 mins later with apologize. That somewhere between her first cath and now there has become such a large disconnect I no longer trust this team. Because if you can't communicate with me something as simple as not to take medication before a procedure, how am I supposed to trust you with the bigger things. You come in and tell me her heart is complex, well I can list her defects, surgeries, repairs, and what needs to be done right now. I listen to every word you say. This may be your patient but this patient is my child, and I have known her heart for longer then you have known her case. You want to come in and make decisions and wait to clue us into what is going on until the last minute, that isn't going to work and we will get another team. A team is built off of trust and respect and there is not an ounce of either in this relationship as of now. 

A few other things we said, but they apologized over and over again, and said they would try to figure out where the disconnect was coming from. We will reschedule this cath, but we will put a pin in surgery until we get a second opinion.