Tuesday, April 14, 2009

And It Just Goes On And On

Now that we are home, and I am lounging in bed with four kids asleep, a piece of chocolate cream pie, and American Idol (even though I am not fond of Quentin Tarentino), the day does not seem quite as long, but it was still a pretty long day.

We spent five hours at Children's Hospital this afternoon for Clare's evaluation of her wrist. She had an ultrasound first. After the tech did her stuff, she wanted to call in a radiologist to take a look at the results. The radiologist informed us that there was indeed an aneurysm in Clare's left wrist. After about an hour and a half of these two women intently studying the ultrasound of Clare's arm, they determined that Clare had an aneurysm and a fistula. They were having some trouble figuring out which veins were involved, but eventually they obtained all the data they needed and sent us on our way.

Next stop was cardiology where we waited for the surgeon to see us. He didn't do anything hands-on with Clare other then feel the site. He explained to us that it was actually rare now to need to do surgery on a fistula. An interventional radiologist (never heard of this occupation before) could use ultrasound and apply compression to the site of the fistula. With the right amount of compression, the fistula would clot on its own and repair itself. Now the fistula would most likely require 1-2 hours of compression for that to happen, so Clare would have to be sedated for the procedure. If that did not work, we would have a plan B, which may be surgery. We asked the surgeon what the fistula meant heart-wise. He said there was definitely increased turbulent blood flow in Clare's left arm as opposed to her right. Arteries are bigger than veins and carry the blood away from the heart. Since there is an opening between the artery and vein, the blood flow is abnormal, which makes Clare's heart work harder. Right now, the fistula is relatively small, but that he wanted this taken care of within the next couple weeks because if the fistula becomes bigger, then Clare's heart will be working that much harder. The surgeon wanted the interventional radiologist to review the ultrasound findings. We met with the nurse practitioner of the cardiologist who oversees Clare's care at Children's. She told us to sit tight in the waiting room while the radiologist looked over the ultrasound, in case they wanted another peek at Clare before we left.

So after more time waiting and waiting, the nurse came back and informed us that one of the interventional radiologists reviewed the ultrasound. He did not feel that the fistula could be repaired by external compression. He wanted the lead interventional radiologist to take a look at the ultrasound, but that doctor was in the middle of a case. They also want a team of doctors on board because the fistula involves one artery and two veins, the position of the fistula in her wrist, and the fact that Clare has Williams syndrome and all the risks associated with that. So the radiologist, cardiologist, anesthesiologist, and the vascular surgeon will discuss the options and what is best for Clare. As the nurse stated to us, this is a unique case. The nurse herself was unsure of what all the options were (surgery versus something else the interventional radiologist could do). Since there were not going to be answers today, she was able to send us on our way. She stated that there should be a plan to go over with us by the end of the week, and that Clare would most likely have something done within the next few weeks. So we have some answers, but still little clue as to what is happening next.

The surgeon did warn us to be mindful of Clare's wrist and that she could do some harm if she fell on that spot. The surgeon said that the area could be painful to Clare because the blood vessels were distended there and there is that thrill you can feel beneath the skin. Shawn is going to have a chat with Clare's teacher and school nurse on Thursday about what's going on (we have been keeping Clare's teacher updated). On a normal day, Clare falls multiple times a day (like she had just fallen at school right before we picked her up this morning and one of her teeth had cut her bottom lip), so we're going to be as extra careful with Clare as we can. (Hard to do with a four-year old sometimes!)

*** After seeing Kerry's comment, I had to add this because, as much as I am whining about all the waiting we have to do with Clare's care, we absolutely are in good hands at Children's. As frustrating as it is to have to wait some more, I am always so thankful to have these amazing doctors so close by who take Williams syndrome seriously and the intricacies it imposes. Clare is not just a normal kid and nothing is routine when it comes to her care.

(And, off subject, the one piece of good news we received today was that all of Violet's thyroid tests came back normal.)


Kerry said...

Phew! What a day! I have to say, from your entry it sounds like you are being completely taken care of (yeah!) I hope you feel the same way. Our prayers are with you guys!!

Aunt Joan said...

What can I add, except rest assured that you are in our thoughts, prayers, and love! Hopefully the specialists will decide soon what is best, and it will happen soon! In the meantime, try to live 'normally', and know we care! Love to all....

Laura said...

A long day, for sure. There's always so much waiting involved, but you're right, they take it all seriously and that's a good thing! Sounds like you're in good hands.

Tes said...

Forever grateful to those professionals that give so much of themselves for our kiddos. Not always easy but I cannot imagine what others less fortunate go through just to survive. I hope all goes well and enjoy your pie! Right now it sounds really really yummy:)

nichole said...

Mmm, chocolate pie. You definitely deserved it after the long day!

I'm glad you have a better idea of what's going on with Clare's wrist even though they are still trying to figure out the best way to handle it.

And cheers to Violet for clearing the thyroid hurdle!!!

I'm home for a few days starting tomorrow, so if you need a hand with anything, let me know.

Noel said...

That does sound very complex. I have never heard of anything like it either. wow. I just hope that they are able to figure out the best course of treatment and quickly. I could not imagine trying to keep Abi from falling/ injuring herself...that is a part of her every day routine I think!

Glad Violet's thyroid came back normal!!

Tammy said...

A long day indeed, but at least steps forward. We know with WS and all their issues, it's a blessing to have a great TEAM of Dr's looking after Clare and your family. Clare and your family is in my thoughts and prayers. Take Care! Tammy