There are some days when it's just one "problem" after another, and I am on overload at the end of the day and feel like I don't even know if I am coming or going. When Clare was younger, these days happened more often since she was in a more critical condition, so I am out of practice with dealing with them now!
Over the weekend, I noticed that one of Clare's back molars looked funny. Clare has had some cavities for almost a year now that we have been monitoring with our local pediatric dentist (who specializes in children with special needs) and the pediatric dentist at Children's Hospital (who would perform any necessary procedures in an OR setting at the hospital). Since anesthesia is very risky for individuals with Williams syndrome, we have been doing all we can to avoid having any dental work done. In November, Clare had a set of x-rays taken down at Children's, and we were cleared to just continue her care with our local dentist. The cavities had sealed themselves and none of the nerves were in danger. So when I saw that her molar looked black, at first, I thought it was just chocolate (shocker!). But Clare said it hurt when we brushed it, and the "chocolate" did not come off, so I made an appointment to have our dentist take a look. Which was today. And, sure enough, the pulp of the tooth is gone. So she needs a pulpectomy (kids' version of a root canal) and crown. As in yesterday (as the dentist put it). Clare is now at a dangerous point where bacteria getting into the bloodstream is a very real risk.
In addition to our normal running around, today was also allergy clinic day for Jamie (if you're a regular blog reader, you know what hell that is for me!), and we are at the end of Shawn being away for the week at a sales meeting. So my patience is thinner, my tolerance is lower, and my legs and back are killing me from shoveling slush and ice this week. And then I added phone calls to Clare's cardiologist and Boston dentist to my to-do list. We still had not heard back about Clare's echo results, so I wasn't even sure she was cleared to undergo anesthesia right now.
Clare's cardiologist, Dr. S, (finally!) called me back tonight. Right at dinner time. On my cell phone (we get almost no service at our house). So I left four kids at the table with hamburgers and pasta and raced out to answer the call and freeze my tushie, standing on the driveway (neglected to grab a coat or gloves in my rush to pick up before it went to voicemail) while I talked to the cardiologist. But I am not complaining. Really I am not because I was so glad to hear her voice.
The good news is that Clare is cleared for her dental surgery from a cardiac standpoint. She is still clinically stable, and her heart looks good compared to what it used to look like. Dr. S feels that Clare will tolerate the anesthesia well and, as long as cardiac anesthesiology is on board, she gives the thumbs up for the dental procedure. However, the bad news is that her pressures are creeping up again. Her aorta gradient and one of her pulmonary gradients are higher as well. Not dangerously so in that she needs to have something done right away, but we are at the point where her cardiologist is talking "cath." Yuck. Dr. S consulted with the cardiologist who handled Clare's care when she was cathed as a baby, and they agree that within the next 12 months or so, Clare really should undergo a cath. Primarily to get a more exact picture of what is going on in Clare's heart, but, most likely, to do a little work while they are in there. The plan right now is to do another echo in 6-9 months and then schedule a cath from there.
So there's my perfect storm. Too many things piled on top of each other in a chaotic day after a long week for me to think about. I am still waiting to hear back from the dentist at Children's to actually schedule a date. I really do not think the procedure itself is going to be a big deal. It's just more the trepidation of putting Clare under anesthesia combined with the fear that bacteria could get into Clare's bloodstream if this is not taken care of soon. Hopefully I'll hear something before the weekend.