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.

5 comments:

nichole said...

I hope this works out. I know its riskier, but it would be great to be able to do the wrist surgery and the frenulectomy at the same time.

Aunt Joan said...

Thank goodness for your persistence, huh?? I am sure someone would have figured it out sooner or later............ You will all remain in our prayers. I know things will go smoothly, but that doesn't change the "Mommy bear" feelings, does it? love to all...

Michelle said...

Thank God for that nurse keeping on top of things! I hope everything works out just fine...xoxox

Christina and Tee Jay said...

Well, some more waiting, but... I'm so glad the tongue-tie might get fixed at the same time! Can't wait to see you TOMORROW!!!!

Noel said...

Hoping that things work out well and you get both surgeries done before the fall. Praying for you!