It's been a long two days on pins and needles.
Clare went in for an echo and visit with her cardiologist today. Her echo looked great. There is no change in the narrowing in her pulmonary arteries and aorta. Everything looks beautiful, and she does not need another echo for six more months. We may even be at a point where Clare is outgrowing her stenoses. That is great news but it still does not explain her right arm issues.
So we are at a number of theories right now:
1) Clare has developed an arteriovenous fistula in her left wrist (this is a fact not a theory!). An AV fistula is an abnormal passageway between an artery and a vein. Normally, your blood flows from arteries through capillaries and back to your heart in veins. When an AV fistula is present, blood flows directly from an artery into a vein, bypassing the capillaries. If the volume of diverted blood flow is large, tissues downstream receive less blood supply. Clare most likely developed the fistula as a result of her open heart surgery 3 1/2 years ago, when an arterial line was placed directly into the artery in her left wrist to take blood pressure measurements. Now the fistula is at a point where you can actually feel it vibrating when you hold Clare's left wrist (it is very strange to feel - like a little vibrator was inserted under her skin). One of the theories is that the fistula is "stealing" blood and so there is a decreased blood flow to Clare's other arm - the right arm which was the arm in question the last two nights. Clare's cardio took blood pressure measurements of both Clare's arms and of the fistula itself. All the measurements were consistent (about 99/60 range), so the fistula should not be a problem right now. If it becomes an issue in the future, then it can be surgically repaired.
2) Clare is experiencing Raynaud's Phenomenon (this is a theory). Skin discoloration and decreased temperature occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. It often occurs after being exposed to cold - both nights it happened immediately after Clare returned inside from playing outside in the semi-chilly evening air. This phenomenon can be present by itself or be a symptom of an autoimmune disease. Clare has congenital hypothyroidism, which is considered an autoimmune disorder. There are other disorders as well that can present with this symptom, but there would be more tests and doctor's visits in the future to see what's what. Also, Clare's blood pressure medication, Propranalol, can cause these blood vessel spasms. Our plan for now is to keep an eye on it, and bring it up with her pediatrician at her annual physical in a couple weeks. If it is a symptom of another disorder, then the pediatrician is our route right now, not the cardiologist.
3) I am ecstatic to say that Theory #3, a blood clot, has now been officially ruled out. Clare's cardio looked at her blood draw numbers from Wednesday night at the ER and realized that the ER doc was comparing the numbers to those of an adult patient (gotta love the local ER!). So she wanted to compare them against a pediatric patient (duh) and re-run the tests today. After Clare's traumatic blood draw experience at the ER, she flipped out the minute we walked into the lab at the doctor's office this afternoon. I loathe putting Clare through that (especially since the whole time, she is sitting on my lap, screaming "Help me, Mama"), but her numbers today were normal. So no clots!
The only really bad news today was that Clare's cardio is leaving the practice and moving further south. We have always had a great relationship with Clare's doctor, and I feel like she truly knows Clare inside and out. We did meet the cardiologist who will be taking charge of Clare's care. He is an interventional cardiologist at Children's Hospital at Dartmouth, which means he can actually perform cath procedures. So she is still in good hands, but I am not eager to have to build a new relationship with one of the most important people in Clare's life (health-wise, that is).
A huge weight has been lifted off my chest that Clare's heart is not the cause of what's been going on the last couple of days. We still do not have THE answer, but at least we have some direction now. And peace of mind.