Looks like the steroid burst is helping! Her oxygen saturations have been 94 and above ever since she got the steroids, and they have been able to wean her oxygen down to 50%. She got a large steroid dose 9ML via IV yesterday (in comparison her daily oral dose is 2ML). She will get that same large dose again today and tomorrow. Then they plan for now is to continue to wean her oral dose and start doing monthly 3 day treatments, but we will have to wait and see how she does before we determine how and if that will work. We dont know if we would have to be inpatient or outpatient, and how the pulse doses would be adminstered. The downfall of long term steroids are they can hinder growth which is what she needs most for her lungs to develop and grow. Plus there are many other negative side effects that could happen, so we really need to get her off of them. But apparently she just isnt ready yet. The echo they did on her heart yesterday shows that her pulmonary hypertension is the same no worse so that was good. She is still on the Sildenafil (viagra) for it and hopefully it will remain stable on that medication. She had a scope of her airway through the trach today, to check again for proper length and placement. They had to give her Ketamin before the procedure to help keep her calm (needless to say she is now sleeping). They feel that the trach length is good and plan to order her another custom trach the same length but a bit wider to avoid having to have cuffed trach -the one with the ballon. And also the new trach they want to get has an extension so that it is not be right up under her neck and maybe make it a litte more comfortable for her. They have to order it so it wont be here till Tuesday, which means I get a break of having to stress about changing it until then. :)
Other than that not much going on today, just dealing with the fun of living in a hospital, and sharing community laundry facilities and of course the 2 showers in the hallway that are often full.
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