Yesterday was April 1, and, true to form, Clare landed in the ER.
It started in the morning when she did not want to eat breakfast. She did not have school yesterday (as it is her one day off), but had a dentist appointment in the morning. I gave her the dose of amoxicillin she needs to take prior to any dental work. Antibiotics always give Clare diarrhea, so I knew that was coming. She did great during the appointment (with minimal crying), but refused to eat lunch as well (and it was a treat - Burger King lunch complete with chocolate milk, her favorite). I chalked it up to the fact that maybe she had an upset stomach from the antibiotics, but could not coax her to eat anything. We were at a Burger King with a play place and, towards the end, she was just laying on one of the mats inside the tunnel structure, not moving. Again, I thought maybe she was just tired from a morning of running around, so we dropped Jamie off at school and headed home. Since Simon and Violet were napping, Clare and I laid on my bed and rested as well (as I've said before, the girl refuses to nap!). She kept saying she didn't feel good, and I asked her where her boo boo was. She said her hands hurt, which I thought was funny. She still would not eat anything, but Clare has been up and down with the virus we've all had plus I still thought her stomach might be upset from the morning's medication (excusing the bad mommy who didn't listen to her daughter!). And I am never sure when we ask Clare where it hurts, if she truly is capable of telling us yet.
Come dinner time, Clare still was not eating and complained again that her hand hurt. When I felt her right hand, it was ice cold. The kids had been playing outside prior to dinner (and it was a tad chilly), so I felt her left hand. The left hand and arm were nice and warm. I felt Clare's right hand and arm again, and they were freezing. That's when we started to get worried. We called her cardiologist who did not like the sound of that at all. She instructed us to take Clare to the local ER immediately and tell them to doppler her arm for a blood clot. Of course, that totally freaked us out! Shawn took Clare right over, and I had the fun job of waiting at home with the other kids. I truly don't know what is worse - being the parent uncomfortable (and without dinner) at the ER for hours on end with a sick child or the one waiting at home, comfortable but with no clue what was going on and keeping a brave face on for the sake of the other children.
Shawn and Clare were at the ER past midnight. The ER staff also noted the drastic temperature difference between Clare's arms. The nurse was able to pinpoint in Clare's right arm where the temperature changed. The ultrasound, however, did not find any sign of a clot in her arms, so Clare's cardiologist wanted the ER doc to take blood pressure measurements on all four extremities and run some blood work. The blood pressure measurements were in a good range for Clare, so that was good. However, the blood work did show abnormalities in Clare's blood clotting factors. Even though they found no actual clot on the doppler, something is not right in Clare's body right now. Clare's cardiologist talked to a vascular surgeon about Clare's blood work results. The ER had already run all the diagnostic tests that the vascular surgeon recommended. The cardio wanted to discuss Clare more with her colleagues at Children's Hospital in Lebanon (the children's hospital affiliated with our cardiology practice), so she discharged Clare for the night with the order to call her office this morning.
After a very late night, Clare woke up for about an hour this morning, then went back to sleep for a while. I have spoken with Clare's cardiologist this morning. She is not comfortable with the results of Clare's bloodwork, especially given that, with Williams syndrome, clots can develop easily. Clare's arm and hand feel better this morning, but she still does not feel good and is very tired. Clare also still is not eating or drinking much, but we really have to push the fluids since hydration is extremely important in keeping Clare's blood vessels in good shape. So now we're in the waiting game. Clare's cardio put a call into the cardiologist at Boston Children's Hospital, and we are waiting to hear what the game plan is. I hate the waiting part of this. I just want some answers. It drives me up the wall to sit here outwardly calm, while inside I am so agitated. Shawn is upstairs with Clare and Violet (Clare is awake again, but complaining of being tired), and I am downstairs with Jamie and Simon (who are coloring while I type).
I think the only certain thing today, though, is that it looks like Clare's tongue surgery may be cancelled once again.