Here is the update... She is still staying kind of stable, there was a drop in her hemoglobin so they gave her another blood transfusion. She really needs to start kicking this on her own and she is not. The doctor came and talked to us tonight for a long time and he was really helpful in just understanding why we still don't know what caused it. Really we may not know She has what they call Hemolytic Uremic Syndrome not caused by the most common sources, pnemonia, or ecolli (but they are not ruling those out totally yet but it is a pretty slim chance it was either of those no tests have come back positive on those). There is not a perfect test to say yes this will give us the answer especially since so many of her tests have come back negative giving us a lot of unknowns.What they do know is she is not getting better she is really just staying the same they really need to see some improvement and we really don't want to have to keep giving her blood transfusions, but she is just not keeping her blood levels up on her own.They want to do plasmapheresis tomorrow here is what it is. What is plasmapheresis?Plasmapheresis is a process in which the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by spinning the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies, is discarded and replaced with other fluids. Medication to keep the blood from clotting (an anticoagulant) is given through a vein during the procedure.What's involved in a plasmapheresis treatment?A plasmapheresis treatment takes several hours and can be done on an outpatient basis. It can be uncomfortable but is normally not painful. The number of treatments needed varies greatly depending on the particular disease and the person's general condition. An average course of plasma exchanges is six to 10 treatments over two to 10 weeks. In some centers, treatments are performed once a week, while in others, more than one weekly treatment is done.
A person undergoing plasmapheresis can lie in bed or sit in a reclining chair. A small, thin tube (catheter) is placed in a large vein, usually the one in the crook of the arm, and another tube is placed in the opposite hand or foot (so that at least one arm can move freely during the procedure). Blood is taken to the separator from one tube, while the separated blood cells, combined with replacement fluids, are returned to the patient through the other tube.The amount of blood outside the body at any one time is much less than the amount ordinarily donated in a blood bank. This is me talking again. They have seen other patients benefit from this and turn a corner and get better. We are getting a 2nd opinion on it but if we feel good about it we will probably let them do this tomorrow. When the Doctor was here tonight we asked him a lot of questions. Many of you have expressed concerns or heard of someone with similar symptoms and this is really what it was or this is how they got better etc. And we really appreciate your concerns we actually asked him most everything anyone has brought to our attention and he had a vey good response to everyone as to why it was none of those things. So just so eveyone knows they have explored and thrown around Many different options and what is going on in her body is HUS the cause is unknown at this point. We are going to go with that until she gives us cause t believe otherwise. Kayelee is in good spirits she had a couple really good laughs today as she was throwing a stuffed bunny at me and just giggling because she thought it was so funny, and also later as she and Kam's were listening to one of Kapri's funny stories of the day told by daddy (he can always tell the stories the best and make everyone laugh). It was just so fun giggling together about silly things. Those were some sweet moments. Some really fun packages sent from aunts that also really boosted Kayelee's spirits. She loved the contents and loves more the people who sent them to her. She so enjoyed her siblings and Daddy coming to visit. We are doing good and feel so much strenghth from our family and friends right now. We are also continuing to feel tender mercies daily. As Kayelee and I were sitting here in the hospital today the door opened and a complete stranger came into our room. She introduced herslef and told me she was Lana Nielson's sister in law. Lana was my Young Women's leader when I lived in Basin City(a lady I love and admire so much from my growing up years) She said she came on behalf of Lana and the Basin City Second Ward (the ward I grew up in and one Joe and I were in when we lived in Washington where we had Kayelee) she brought flowers and some sweet presents for Kayelee, and more than that a presence of Love and caring, it felt as if she represented everyone who could not be here but has fasted, prayed, thought, cared, called, etc. on behalf of Kayelee it was one of those very sweet tender mercies. We were two complete strangers with some things in common and we sat and visited for probably an hour it was so fun and sweet and it boosted my spirits. So we are doing good in here even though we are anxiously awaiting the time when we can all be home as a family again.
