Today was a pretty unsettled day for Lauren. Her temp was up and down, her heart rate was elevated and she just seemed uncomfortable. She has had several very rough gagging spells that are clearly painful, and since she is not allowed to eat, the barium from her upper GI two days ago is moving veeeery slowly through her gut, causing lots of discomfort. We were not fond of our nurse today, who was having car trouble and decided to leave her station several times during her shift to deal with that. Fortunately, we learned that tomorrows nurse will be one of the fabulous nurses that cared for Lauren after her shunt surgery. Tonights nurse is pretty awesome as well, and Lauren is her only patient. Yay! I was also able to confirm some unsettling news. Those who are following our story already know that we are very sad and frustrated that Laurens last surgery proved unsuccessful, which is why she is here again. We also learned, however, that the Ladds procedure (to tack down her intestines) that was supposed to be done during the last surgery was not actually done. We have no idea why it was not done, and we have requested to speak with the surgeon, but he (and his team) has been conveniently unavailable for the last two days. Tomorrow might have to be one of those days where Momma bear rears her ugly head. On a positive note, the ENT surgical team has been tracking this issue and has advocated for us as best they can. In addition to Laurens throat and stomach issues, there has been another growing issue that they will need to address fairly agressively after surgery.... When babies recieve a BT shunt, they will often get one that is slightly larger in diameter than they really need. The reason is that, as the baby grows, the shunt will not, and therefore needs to accommodate a growing heart. In almost all babies that get this kind of shunt, the pulmonary artery is more permanently closed/constricted. Laurens pulmonary stenosis is not necessarily due to the valve being closed off, but more related to the muscle tissue surrounding the valve. This means that the flow in her artery is more dynamic and changes based on the amount of stress she is in. In recent days, she has had excess flow/blood pressure to the lungs because they are recieving blood from both the shunt and the pulmonary artery (which is currently a little less constricted than usual). This means the balance between the blood flowing to the lungs and the blood to the body is off. This is not a good thing. They have been trying to keep her more balanced by lowering the blood pressure throughout her body to encourage the blood to flow out of the lungs more readily and even out the pressures. This is being done right now with a constantly changing combination of meds. It is unclear how improving her feeding issues will impact this issue at this point. The hope is to be able to find a good combination of meds for now, and then once Lauren can finally start taking in more calories and growing again, she will naturally balance out. If this doesnt work, then I have no idea what the next intervention would be. It rattles our brains to try to comprehend the complexity of this beautiful little girl. It is crazy how one little issue in one part of the body will compound a million other little issues. Please pray for Lauren to become comfortable so she can rest up for Mondays surgery, for her surgery and recovery to go smoothly, and that the doctors can remedy the issue of lung pressures with minimal intervention.
Posted on: Sun, 28 Sep 2014 02:53:08 +0000
Recently Viewed Topics
© 2015