Wednesday, June 24, 2009

The Runaround

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.


Christina and Tee Jay said...

A few things... the post is NOT too long. It has PLENTY of information that I wanted to read. And don't quit your whining unless it starts interfering with you life (which I don't think it is). Whine here in a medium where you can! Whine here to people who love you, Shawn, and your children.

Most importantly, know that we are loving you and praying for you from Philly to Manchester.

Aunt Joan said...

Teresa & Shawn ~ I have to agree with Christina about the "whine" issue. You have every right and plenty reason to complain - not whine, really!! I am sorry that things have been so stupid with this issue. I pray that Clare can have the procedure and be done with it ALL! Love & paryers from St. Louis, too!

Michael and Michelle said...

You have plenty of reason to whine. I can't imagine how frustrating all of that can be. Besides, a little whining in print, can do a world of good for you in life. And like Christina said, you gave plenty of info. Sometimes it does come down to two s@#%&ty options, and you have to do what's best for everyone in the family. We will pray that July brings you that surgery!!

k's mama said...

I am so glad that I am not the only whining blogger!! Real life is so messy and this post clearly shows that!! YOur whole deal with the dentist is absolutely crazy. 3 weeks of eating on one side only? insane!!!
And you have every right to incredibly frustrated with the runaround you have been getting with regard to Clare's fistula. What a headache!!! And next time you have to go to Boston please let me make your life a bit easier by at least watching jamie and simon!!!!!! I owe you some babysitting anyways!

Dawn said...

Waugh! I feel frustrated for you. Hopefully they will get back to you SOON with another date.

Tes said...

You know girl you and your family have been through a lot! Whine all you want we all know how you feel. Take care of yourself and soon this will be behind you all. I pray all goes well soon.

Noel said...

I don't consider it whining at all. I would be so stressed out and angry about the whole thing!! Just reading your post, I am stressing out for you! :)
You did the right thing about this weekend though. Sometimes you do have to choose and the options aren't always the best or the easiest to choose between!

Auntie Becky said...

Well Tree, as mom says "I wish I had a magic wand to make everything better" but since that isn't an option, I want you to know that I am praying for you all each and every day!! I can't imagine how frustrating it must be!! Love you all!!