I am going to preface this post by warning one and all that I am not in a good mood. It's most definitely been one of those days. After enduring three weeks with a temporary crown on one of my teeth (read - three weeks of eating on only the right side of my mouth), I finally had my permanent crown put on this afternoon. Unfortunately the crown is a bit of a tight fit, resulting in the dentist and the hygienist attempting to yank yards of floss between my molars with little success. I am not sure why they needed to floss my teeth, but I was not in a position to ask questions (mouth wide open, blood dribbling down my chin). So after breaking floss string after floss string, the dentist warned me that my gums "might be a little sore" tonight. One of the understatements of the year.
Today was the day we met with the general surgeon who was going to repair Clare's fistula. (Note the use of the verb WAS. Was was was was was.) We endured over two hours of driving hell down to Boston (we live about an hour from Boston) with four grumpy children we had to wake up and load into the car, enticing them with promises of Dunkin Donuts. Even though we gave ourselves an extra hour of travel time, due to construction traffic (thank you, President Obama) we still arrived 15 minutes late for our appointment. We had been forewarned that the surgeon was "squeezing" us in today since he does not have an appointment opening until the end of July. Wednesday is his day for meetings, so he agreed to meet with us between meetings. Shawn and I were both stressed about being late (my nightmare was that he would be unable to meet with us after that torturous drive to the hospital), but the surgeon was actually very understanding about us being late. Given that he himself made us wait another 30 minutes past when we arrived. This is now the fifth doctor we have met with concerning Clare's fistula.
So here's the recap for those who cannot remember in detail each of my posts:
April 1 - ER doctor first notices the thrum in Clare's wrist.
April 3 - Clare's cardiologist examines Clare and determines that she does indeed have an AV fistula in her left wrist. Decides on a "wait and see" approach.
April 7 - A second cardiologist disagrees with the first cardiologist's approach and decides to send us down to Children's Hospital to meet with a surgeon about undergoing surgery.
April 14 - Meet with the cardiovascular surgeon and Clare undergoes ultrasound scans on her arms. The surgeon decides this would be better addressed by Interventional Radiology and refers us to them.
April 17 - More scans done at Children's and Clare is seen by the interventional radiologist. He says "yes, indeed, I can fix this!" (Okay, I am paraphrasing.) He does not know, however, what method he will use.
April 23 - IR calls to schedule the "procedure," but that is the only information the woman has. We refuse to schedule anything without knowing what Clare is undergoing, so she promises to get back to us.
April 27 - We find out Clare will undergo a catheter embolization of the blood vessels. The IR schedule is full until July and the July schedule is not available yet.
June 11 - After waiting more than a month and hearing nothing, I track down the cardiology nurse. She finds out that IR is unable to fit Clare in before the fall, so cardiology has decided to send Clare back to a surgeon (this time a general surgeon) so she can have this repair done in July.
And back to today....
The surgeon did not say these words, but Shawn and I had the impression that he thought surgery on Clare's wrist was overkill and unnecessary. According to him, it is a procedure best addressed in Interventional Radiology. He was going to pull his magic strings and get her on the July schedule. He literally told us to "wait right here" and he would go talk to IR. Upon his return, he told us that they could fit Clare in on Friday. FRIDAY???!!!?? She would have to be admitted tomorrow for pre-op as everyone agrees that Clare needs overnight hydration via IV before undergoing anesthesia. After all my complaining about this taking too long, Friday was just not an option. Logistically, we cannot coordinate our life with so little notice without going insane. Obviously, in an emergency situation, we would manage somehow. (And, very important in our family dynamics, is that this weekend is Shawn and Jamie's annual Father-Son Camping trip with our church, which would have to be cancelled.) But the surgeon agreed this is a priority, not an emergency. (He really seemed like a great guy, we are just exhausted from the never-ending doctor shuttle.) Soooooo.... it's back to waiting for IR to get back to us with a date. The surgeon pretty much guaranteed it would be in July, so I am praying he really can pull those strings of his.
A ridiculously long post with very little information. I know, I know, quit my whining. We could be headed back to Boston tomorrow and have this thing done with. In this four-year journey, though, I have learned many, many things. There will be things I cannot change. Things I cannot fight against. Things I just have to accept. And one of those things is that there will be times where I have to choose between two sh#$%tty options. This is definitely one of those times.