Owen sailed through his biopsy today... no issues. His heart pressures look great and the SVC gradient, which we were talking about needing to stint open, is significantly improving on it's own. We won't know the biopsy results until tomorrow, but I'm guessing it will be good news.
We got settled into our room in the short stay unit for Owen's infusions and we should be out of here by about 5am tomorrow. See that recliner with my laptop... that's a wannabe recliner and I get to sleep in it tonight. Try not to be too envious.
Child Life brought Owen this awesome Batman Jail and told him he could keep it. He has been playing non stop for two hours with Batman, Bane and the jail. It's been wonderful. No TV.. no noise.. just quiet play and using his imagination.
Cardiology came in to do his weekly clinic bedside and Owen looks great. His labs were all perfect. The only thing we are really watching is those darned antibodies. The staining of the biopsy samples have all come back with level 1 AMR (Antibody Mediated Rejection) but it's not affecting his heart. The resolution for the AMR is IVIG, which we are currently doing. Our hope is that they lower over time and he responds well to the IVIG, as he has in the past. We did talk about the possibility of Plasmapheresis, which is pretty invasive. It is most effective when used early on with the highly sensitized patients with very high levels of antibodies, so it may be beneficial to do it now, rather than later. They will discuss it on Thursday in their weekly HLA meeting (antibody patients). The argument could be to just let him be since his antibodies don't seem to be affecting his heart (function, pressures, valves).
We are tentatively scheduled to go home in four weeks pending things continue to go great. Yay!
4 comments:
Oh I remember those recliners from Taylor's last hospitalization. They are by far the LEAST comfortable things in the world! Praying for good results and that your back doesn't kill you in the morning!
The recliners at CS Mott Children's Hospital in Ann Arbor MI is where David had his surgeries. When they moved into the new hospital they got all new furniture. The recliners are much better now but still not great. The makeshift bed thing they have in the rooms are actually worse then the chairs. They spent all that money on the new hospital they could have made sleeping arrangements for the parents a little better.
I think those chairs are ridiculous!! My mom has had to sleep in many of them since I and my brother used to be in the hospital a lot when we were little and she hated them!!! I'm so glad Owen is doing so much better!!!
Owen is just an amazing kid...but I'm pretty sure I know where he got it! So happy he's still his awesome little self having to go through all of this. Yay for batman jails and crappy recliners, so thrilled his new heart is doing well! Hugs to you :)
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