18 Sep Bleeding
Keegan’s bleeding has slowed down significantly this morning, after 18 hours of nurses, doctors, Gray and me all taking shifts holding pressure on the site. We ended up having to give him two different types of clotting factors to stop it. So far, we haven’t seen any results of stroke or seizure, but it is a little too soon to tell. He has hematomas developing on both hips, his lower back, and down his legs. Despite that, the doctors actually think he has been “bleeding” actual bone marrow, not peripheral blood. The danger with that is that while he may have relatively “stable” blood counts right now, as the circulating blood is used up, his bone marrow may not be able to replenish it after so much loss. We won’t know that until it happens though, so as with almost everything else, for now, we just wait and watch.
We are starting him on a PCA (pain) pump of dilaudid this morning to help keep his pain and agitation more under control. The more upset he gets, the more he bleeds. His GI system is also taking a hit, so they have stopped using it altogether. If there is not an IV form of a med, it is not being given. His is not urinating without the help of diuretics right now, but we are hoping that will self-correct in time.
We are waiting to see the rheumatology and hematology teams this morning to see if they will proceed with the next immunosuppressant drug today to slow down the MAS or wait until tomorrow after the last dose of steroids are given. We will be in the ICU for a few more days at least. In the coming days we will see more results from the bone marrow biopsy, then we may have a slightly better idea of which drugs will work the best to treat him in the long-term.
More later. Words are simply not enough to thank you for your prayers for Keegan right now. We are beyond grateful.
