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.

Friday, June 12, 2009

A Day With Clare

Shawn took Jamie and Simon to his mom's house for the day. Since Clare had school, she stayed home with Violet and I. Having four children, I understandably have to divide my time and attention between them. There is always compromise on what we do during the day, depending on everyone's desires. Other than sleeping and eating when she wants to, Violet is fairly easy-going right now, so I thought it would be a rare day to let Clare do what she wanted all day when she wanted to (within reason!). It was a fun day and a great opportunity to see what Clare enjoyed doing.

Before school, we ate toaster strudels together for breakfast, then blew bubbles. After soaking the living room carpet with bubbles, we watched Mickey Mouse Clubhouse (and I took a quick shower during the second half), got dressed, and did our hair. Clare played with her bucket of ribbons and barrettes for about 15 minutes. This is something she asks to do almost every morning, but I usually say no because it means there are about a hundred tiny items everywhere that I have to pick up after. But today was a day for saying yes. Then it was off to school. While Clare was at school, I did my housekeeping chores, so I wouldn't have to do it after I picked Clare up.

After school, Clare wanted to go to the grocery store to get a cookie and a piece of cheese (two free things they offer at our grocery store), which worked perfectly in my plans since I needed to go anyway. When we came home, Clare wanted to play outside. She moved firewood from the side of the shed to the side of the porch. In doing this, she discovered one log full of slugs. Not my choice of a girls' day activity, but Clare wanted to play with her new friends. (I just watched - there is a limit to how much sliminess I can touch!) By the time she was done, I am not sure if her friends survived the playdate - it was hard to tell what was dirt and what was slug slime (or body parts?) on her hands.

Time for hand-washing, which Clare stretched into a 20-minute activity. (Again something I rarely allow her to do - play in the bathroom sink to her heart's content with the water, soap, and lotion.) Then a late lunch of ham and cheese and bananas. (Since someone was full earlier from the free stuff she ate at the grocery store - cookie, cheese slice, small cup of Whoppers, and two Hershey Kisses. I did put my foot down on the Ben & Jerry's ice cream - enough sweets! Apparently Friday at noon is THE time for free samples.) During lunch, I received my Tastefully Simple order (and felt good for helping support Williams syndrome by ordering too much yummy food!), so Clare and I delved into the box after lunch and examined each item in detail and made towers out of the boxes and bottles. She loves to open packages, but the majority of our UPS drop-offs are defibrillators for Shawn, so she is not allowed in on that fun.

And now we're off to meet Shawn and the boys at the beach for the rest of the afternoon and evening. The rain looks like it may hold off for a little while and the sun has popped out. You may be bored by our run-down of the day, but I loved every minute of it. It was one of those perfect days. I don't regret having four children in the least and the demands on my time and attention, but it was amazing how much I learned about one child when I spend hours with just them (okay, and the baby, but she was a very cooperative third wheel!).

Thursday, June 11, 2009

Ummm, Hello? Anybody There?

We're here, just busy!

Way back in.... I cannot remember now, the plan for repairing Clare's aneurysm/fistula was to do so by interventional radiology (IR), using coil or glue to occlude the vessels. Clare and Shawn met with the radiologist, all the ultrasound scans were done, and we were waiting to hear from Children's Hospital on a date when the July schedule was open for booking. Come June 1, we still had not heard from the scheduling department. So I called our awesome cardiology nurse down there, who promised to track down some information for us. True to her word, the nurse called the next day and explained that she did not see Clare anywhere on the procedure schedule, so she would have the secretary from IR to contact us by the end of the week.

IR never called us. I was going to give them one more day (tomorrow), but then the cardiology nurse called today to let us know that IR was going through some personnel changes and were not sure when Clare's procedure would be booked. We were most likely looking at another few months. Before I could get all "mother bear" on them, the nurse said that Clare's cardiologist at Children's Hospital had already decided that was not going to cut it. His fear is that, by the fall, the aneurysm/fistula could grow to a point where doing the repair in IR would not be successful. Then that procedure would have been for nothing, and Clare would be headed into the OR for a second procedure under anesthesia. So we're not going to wait that long and Clare will undergo surgery on her wrist instead in the next few weeks. The bad news is that surgery is riskier. The good news is that it's going to get done soon plus there is a very good possibility that Clare can have her frenulectomy done at the same time, since she will be in an OR under anesthesia. That would be awesome! We were already planning on setting up her frenulectomy for August once her aneurysm was fixed. But if Clare can have them done at the same time that would be so much easier and less risky for her.

Since Clare will most likely have the two surgeries done together, she is going to be operated on by the senior general surgeon at Children's Hospital instead of a vascular surgeon. We will be meeting with the new doctor in a couple weeks so he can meet Clare, see the site, and go over the procedure with us. Then hopefully we can get on the schedule for July. Other than IR (who Shawn did not like the doctor there anyway, so this is probably a good thing!), everyone else seems to want to get this repaired as soon as they can now.