ICU Update

We have finally gotten to see our sweet girl in the ICU. It never gets easier seeing your child with a breathing tube, but Clare actually looks pretty good considering. Her color is beautiful (thanks to the blood transfusion), and she looked fairly peaceful... until they started letting her wake up from her sedative and paralytic. But that is a good thing because we're aiming to be discharged tomorrow.

We met with Clare's cardiologist after the cath. She did have another stent placed but it was not in a third artery, as we assumed. One of her existing stents was crushed. This could not be seen on the chest x-ray or echocardiogram because of the stent's position, but once the cardiologist was in her blood vessels during the cath, they had a much better angle and could see that the stent was crushed. Thankfully it was not obstructing all blood flow (or else there would be a real problem!), but enough to be worrisome. The cardiologist explained that this was most likely due to wear and tear and that stents used in infants are not as durable as stents used in adults. Another longer stent was placed inside the existing stent and ballooned open to widen the first stent as well. So now Clare has two stents in the same location. They also dilated many of Clare's distal pulmonary vessels in her lungs, which was the primary cause of Clare's exceedingly high pressures. They were able to get the pressures in her heart down 30 points and hope that that number goes even lower once she recovers from the cath.

Clare's aorta looks great, which proves again what a fabulous job her surgeon did 19 months ago. There is no coarctation (a narrowing where the surgical patch ends) this time and, although her descending aorta is narrow, it is not at a point where she needs any intervention on it. Her coronary and renal arteries look good as well. Clare did have some "misbehavior" during the cath (one of the doctor's terms - no, Clare did not throw one of her temper tantrums!) - she had drops in her heart rate and blood pressure swings. But they were able to stabilize her with dopamine and epinephrine. She is doing fine in the ICU and is currently only on heparin, the blood thinner so clots do not form in her new stent.

Clare's latest chest x-ray showed no fluid in her lungs (pulmonary edema), so the doctor is aiming to have her off her ventilator sometime tonight. Before I left the hospital for the night (leaving Clare in Shawn's capable hands - and the nurse's!), Clare was beginning to stir. She is understandably agitated - two tubes going down her throat, her arms are tied down so she cannot pull the tube out, and I am sure she is generally not feeling the greatest. She would open her eyes when she heard my or Shawn's voice, so she knows we are there (or were there, in my case) and is somewhat aware of her surroundings. Right before I left, the respiratory therapist started turning down the pressure in Clare's ventilator to see how she would do with some breathing on her own. If Clare tolerates this, they will continue turning down the pressure and then pulling the tube. The nurse is ready to give Clare morphine if she continues to be agitated with the breathing tube in. If she is extubated early enough tonight, then she may be able to skip spending a second night on the cardiac floor and can be discharged from the ICU to home tomorrow. That would be wonderful news!

Simon and I are back in the hotel now to get some sleep, and we will head back over in the morning and get all the news.