Looking at our future

This is Elise being amazed by her Fish aquarium that soothes her to sleep the night before her heart cath. Here she is also the day before her cath in her cute little denim dress given to her by her cousin Claire. I don't have any pics of Elise today, so I thought I would post some from the other day. Elise was successfully extubated today around 5am, and has done well today. The doctors are letting us offer her bottles, although she hasn't been too interested. But I can't blame her, I wouldn't be either if I had just had a tube down my throat. The Cardiologists had a meeting about Elise's condition yesterday, and met with Jason and I today to discuss her options for treatment. There are two ways to treat PPHN, one being PO (by mouth) drugs, and the other being the IV infusion of Flolan. The problem with PO meds is that they take longer to take affect, sometimes weeks to months. And the benefit of IV Flolan is that is helps almost immediately. The doctors decided with the combination of Elise's high pulmonary pressures and her recent life threatening codes we don't have time to sit around and wait to see if the PO meds will work. So the first of next week Elise will go to surgery to have a central catheter placed called a Broviac. Here's a link to a picture of a kid with one http://images.google.com/imgres?imgurl=http://lindseyann.net/images/broviac3.jpg&imgrefurl=http://lindseyann.net/morephotos.aspx&h=480&w=640&sz=141&hl=en&start=2&um=1&tbnid=wygwm1wxpMYKRM:&tbnh=103&tbnw=137&prev=/images%3Fq%3Dbroviac%26um%3D1%26hl%3Den%26sa%3DN Basically its a catheter that doesn't have to be changed like a regular IV. With this catheter Elise won't be able to go swimming or be submersed in water for baths. We are still waiting to meet with the nurse practitioner that works in the pulmonary hypertension clinic here to talk about the infusion pump that we will go home with, but we believe it is about the size of your hand. We tried to get a feel from the doctors about Elise's life expectancy and quality of life we can expect, knowing that they wouldn't have any definite answers. But, they said they were "optimistic" that she could still improve with age, but didn't have any studies to base that on. I asked compared to the other kids in the PPHN clinic where Elise ranked with her severity. And the cardiologist said that they really don't see it in kids as young as her, so they weren't really sure how she was going to do. They stressed that the meds could work well, or she could continue to worsen. We discussed the possibility that she could need a lung transplant down the road if all other treatments fail, so we are going to meet with the transplant specialists next week to possibly put her on the list. They said it would be good to get her on the list although she isn't ready just yet, because we can always turn down a donor if one comes available before she needs them, and she can be taken off the list completely if she ends up not needing them. Jason headed back to Springfield today and will likely stay there until the 8th of August to take his boards. I will remain in STL until the 21st of Aug when I start my new job in SPFD at St. John's hospital, taking over our insurance. I will also continue to work at Skaggs part time. We aren't sure how much longer we will be up here, but the Flolan takes a while to titrate to an effective dose. And we want to make sure she has improved before being discharged home to avoid any episodes at home. So we are anticipating 1-2 months. The doctors also want to run more tests on Elise starting with a CT of her lungs to look at function, and then possibly a lung biopsy to look for any congenital defects. Thank you to everyone who has expressed their support. You all are amazing, and we love you all for helping us through this. I better go, Elise just woke up. I'll post again on Sunday. Kristin