Still sleeping under a ninja blanket! Rounds are not until the - TopicsExpress

Still sleeping under a ninja blanket! Rounds are not until the 10:00 hour in this ward. Thats when well get to hear the hematologists big picture thinking on all thats transpired (and how to go forward). Last night he watched Apollo 13, took a shower mostly on his own, and enjoyed a visit from Greg and Sydney. Parents received a bit of training in transitions -- meaning we had to have a little help learning to look away from him and let him sleep without as many monitors and constant expert opinion on weird symptoms, since thats how it will be when he goes home. Scary things could happen but he should be mostly OK, and we all have to accept that level of uncertainty so he can live as normally as possible over the next six months. Some have asked for more details about the surgery. Im sorry but every time I try to address that topic I get a little overwhelmed and am not ready to go there, so itll have to keep until later. It was successful, the surgeon himself was our biggest miracle of all, and this success is why Nathaniel gets to leave the hospital at all, let alone this early. We (including Nate) do want to talk about it as soon as weve processed some big emotions about it. He has been invited to meet Dr. M to be told exactly what he went through in those four hours and we hope that can happen today. People are also asking what the future might look like. We will know more after rounds but the gist is this: he may go home and live his life for the next six months, with some restrictions and within a short distance from the hospital. The restrictions are related to the very heavy duty blood thinners. He will be walking as much as possible but otherwise seriously restricting activity to minimize risk of bruising or bleeding. He may not work due to injury risk and not being allowed to stand for long time periods. He must stay near the hospital because he will be visiting the Clot Clinic very often so his meds can be very closely monitored and modified as needed, and if something happens it is imperative that this team at Riley be the ones to take care of him. His case is rare and complex and in an emergency there wont be time to being new doctors up to speed. As most of you know, we live about ten miles from Riley. So the constant visits will be very possible. Homeschooling means that his studies can probably progress as planned for his senior year. So thats the six month plan unless something happens. The meds should prevent another buildup of clots, and let his body heal and deal with the many small clots he has now, while the doctors continue studying his case and figuring out the why. Once they know more about the disorder the other boys will be evaluated, too. Please pray that Nathaniel may safely go home today! Thanks to all for prayers and support, and for the material help we are receiving. From the moment we arrived at Riley we have not once felt unsupported or alone. More updates after rounds. Love, Amy