Sunday, April 18, 2009 Updates From Our Visit Today

We went to see Shailee today, and she is still doing ok, and is stable. She now weighs 6 pounds 3 ounces, but once again that is including the cast on her leg, but it weighs very little. They are increasing her formula to 63 cc's due to the weight gain as well. She is still on antibiotics but instead of being on 2 she is only on 1 kind. She still has the pnuemonia but it is only in the left lung, and it is improving, but there is a staff infection in the tube that goes into her, but they assured us that it isn't a dangerous type of staff infection and that it isn't the type that gets into your blood, they also said it is very common since the tubes area foriegn body. Her ophalecele is looking great! it is much smaller and the new skin is coming in really well. she is still having alot of secretions but they are hoping the Robinul will work, but it is too soon to tell. They are also canging her over to a different type of heart medication tonight, one that is an oral medication (which she will get through her feeding tube, obviously) but they are starting her on this and taking her off the milrinone that way if all goes well with the new medication she will be able to have the pic line removed once she is done with the antibiotic. it is also another step into getting her home as well because this will be the heart medication that we will learn to give her at home. her vent settings were lowered some today as well because her blood gases came back good this morning, and they are planning to lower the vent a little more tonight before her morning blood gases are taken to see if they are still good. she will have another chest x-ray tomorrow as well as all of her other weekly labs that she gets on monday mornings. they are also planning to do an MRI of her brain eventually, but it isn't anything urgent, just something to get a baseline from about her brain activity and so on. Shailee is also doing better with the gag reflex, she gagged several times today on the stuff in her throat as well as when she is being suctioned!!! every little step with this is a good thing. she is also starting to attempt to try and bring stuff up when it is in her throat, she makes a little cough and trys to clear it out, but not quite enough to do it yet. she was also moving her tounge in a "sucking" motion on her tubes today like newborns do when you pull their bottle out of their mouths before they want to stop eating, so hopefully she will start getting the hang of all these things in the near future. they are still doing the chest therapy on her for the pnuemonia, and they had her laying on her tummy because it seems to help with the secretions a little more. We also talked with one of the doctors today and she said that there is a good chance that the tubes in her throat could cause the vocal chord paralysis, and there is always that chance that it isn't permanant, but she will still have to have the tach and the g tube, and if these things come into play later down the road then that is great! so all in all she is doing well, she is progressing slowly but still progressing which is what matters the most. here are the new pics of her from today.