The Kid's Got A Lot Of Heart
For those of you lucky enough to have escaped the "constantly pester" level of my email distro list, here follows a little status report. Un/fortunately, we didn't get to bring Miss Ainsleigh home with us as planned last weekend. Rather, I arrived at St. Mark's at 5:30 Friday afternoon to find that my daughter had been put on a ventilator and transferred into the most-critical-care section of NICU. I was, shall we say, surprised.
There began a long and scary evening in which Ainsleigh was transferred from the hospital she was born in to the Intermountain Primary Children's Medical Center. Upon arrival at primary very late Friday night, we learned that our daughter has sort of a congenital heart defect combo plate. Some of the problems are minor: she has both atrial and ventricular septal defects (basically little holes that allow blood to flow from one side of her heart to the other) that the doctors think will resolve themselves as she gets older.
One of the problems is not (or, I should say, has the potential to not be) so minor. She has a small coarctation of her aorta; this is a little bump of tissue on the inside of her aorta that impedes blood flow to her lower body. To date, she has adequate blood flow past the coarc and is OK. But she also has a "patent ductus arteriosis", meaning that the fetal blood vessel connecting her pulmonary artery and her aorta hasn't closed yet. When this vessel closes, it often causes a small narrowing of the aorta at the point where the two come together. Trouble is, the ductus joins the aorta right across from the existing aortic coarc; thus, the narrowing of the aorta associated with the closure of the ductus may exacerbate the coarctation and cause a critical problem with the blood supply to her lower body.
At the moment there's no clear consensus among the pediatric cardiology staff as to how likely this is to happen. On Sunday, two doctors wanted to release her. On Monday, however, another group of doctors came on shift and decided that she should stay in hospital until the ductus is completely closed. Their logic is that the closure of the ductus probably won't cause a critical problem, but that with the stakes involved here "probably" just isn't good enough. We were told Tuesday that if the coarc does become crtical when the ductus closes, she might go from OK to terminal in as little as fifteen minutes. If that happens while she's at home, she'll almost certainly die. So they feel like they've just got to keep her there, and keep examining her, until they see that the ductus is completely closed and blood flow past the coarc remains adequate.
Nobody's quite sure when that will be. Since her transfer to Primary Children's Hospital, she's had three echoes: overnight Friday/Satruday, Sunday morning, and Tuesday morning. All still show an open ductus, and there wasn't any significant narrowing of the ductus between Sunday and Tuesday. They're going to look again Thursday; if the ductus isn't on its way to closed by then, they'll talk about administering drugs that will force it to close under controlled circumstances. Once the ductus has closed, we'll be able to make a final decision on whether to take her home right away or go ahead with the surgery to remove the coarctation. I should emphasize here that the former (happy homecoming) is a lot more likely than the latter (surgery).
In the meantime, Ainsleigh looks good and seems happy, while her mother and I engage in that least satisfying of human pursuits: waiting.
There began a long and scary evening in which Ainsleigh was transferred from the hospital she was born in to the Intermountain Primary Children's Medical Center. Upon arrival at primary very late Friday night, we learned that our daughter has sort of a congenital heart defect combo plate. Some of the problems are minor: she has both atrial and ventricular septal defects (basically little holes that allow blood to flow from one side of her heart to the other) that the doctors think will resolve themselves as she gets older.
One of the problems is not (or, I should say, has the potential to not be) so minor. She has a small coarctation of her aorta; this is a little bump of tissue on the inside of her aorta that impedes blood flow to her lower body. To date, she has adequate blood flow past the coarc and is OK. But she also has a "patent ductus arteriosis", meaning that the fetal blood vessel connecting her pulmonary artery and her aorta hasn't closed yet. When this vessel closes, it often causes a small narrowing of the aorta at the point where the two come together. Trouble is, the ductus joins the aorta right across from the existing aortic coarc; thus, the narrowing of the aorta associated with the closure of the ductus may exacerbate the coarctation and cause a critical problem with the blood supply to her lower body.
At the moment there's no clear consensus among the pediatric cardiology staff as to how likely this is to happen. On Sunday, two doctors wanted to release her. On Monday, however, another group of doctors came on shift and decided that she should stay in hospital until the ductus is completely closed. Their logic is that the closure of the ductus probably won't cause a critical problem, but that with the stakes involved here "probably" just isn't good enough. We were told Tuesday that if the coarc does become crtical when the ductus closes, she might go from OK to terminal in as little as fifteen minutes. If that happens while she's at home, she'll almost certainly die. So they feel like they've just got to keep her there, and keep examining her, until they see that the ductus is completely closed and blood flow past the coarc remains adequate.
Nobody's quite sure when that will be. Since her transfer to Primary Children's Hospital, she's had three echoes: overnight Friday/Satruday, Sunday morning, and Tuesday morning. All still show an open ductus, and there wasn't any significant narrowing of the ductus between Sunday and Tuesday. They're going to look again Thursday; if the ductus isn't on its way to closed by then, they'll talk about administering drugs that will force it to close under controlled circumstances. Once the ductus has closed, we'll be able to make a final decision on whether to take her home right away or go ahead with the surgery to remove the coarctation. I should emphasize here that the former (happy homecoming) is a lot more likely than the latter (surgery).
In the meantime, Ainsleigh looks good and seems happy, while her mother and I engage in that least satisfying of human pursuits: waiting.
posted by Brian @ 12:09 PM
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