Our New Way of Life

To those of you who have gotten used to me posting daily, our new way of life prevents me from that luxury now. Not that I am complaining! Things are more "low-key" here in that Clare does not have a nurse constantly by her side, and I do much more of the caretaking. So my posts may start to become more infrequent. Tonight, Shawn is here and he is having his Daddy time with Clare, so I got to slip out for a little while.

Clare has settled in nicely to life on the cardiac floor. We had a great night's sleep last night (first night that I slept with her in the room) and a fairly good day. I belong to an e-mail list for the Williams Syndrome Association and have been told many times by experienced parents to expect "two steps forward and one step back" with any procedure, recovery, etc. I am finding that is so true. Clare made two big steps forward today in that both her oxygen cannules and feeding tube were removed. She is finally tube-free on her face! We were both very happy with that development. Her nursing is still slow, but she is doing much better. Her weight gain and fluid output (a.k.a. diapers!) have been sufficient enough that she no longer needs supplemental feeds through the tube.

Clare's step back is hopefully a minor one. She had two moments (one today and one a couple days ago) when her heart rate plummeted for about two seconds then went back to normal. The first time it happened was in the ICU. The nurse thought it might just have been a glitch in the monitoring system, and since it didn't happen again, didn't think twice about it. Then it happened again today while Clare was sound asleep. It was a scary moment for me because I was sitting next to her listening to her snore softly while I read. Suddenly there was complete silence, followed by a loud choking/gasping noise by Clare, and she woke up crying. The alarms on her monitor were going off from this episode. Her cardiologist believes this occurrence is due to her new blood pressure medication. The drug slows her heart rate so her heart does not work as hard as it did pre-op, thus lowering her blood pressure. The doctor explained to me that when you hold your breath or bear down, your heart rate normally slows down. He said it sounded like Clare might have gagged on her saliva while she was sleeping and, since she still had the feeding tube and oxygen in her nostrils at the time, she actually stopped breathing for a second. Under normal conditions, this would cause her heart rate to drop. Due to the drug, it makes the drop even more pronounced. Since the tubes are now gone, they are going to watch and see if it happens again (she is monitored 24/7 anyway). If so, then the doctor will change her medication.

Tomorrow Clare is having a sedated echo so her surgeon can see how heart looks more than a week post-op. I am praying for good news!