No blood transfusion yet.....

So I got up and called first thing this morning to the Hematology department (per the message left on my answering machine on Friday). I gave her all the info and told her I was not sure what the doctors want to do at this point. She said she would talk to the doctor and call me back. We headed out and dropped Jaxon off to grandpa. Not knowing for sure how long we will be at Primary's I don't want to make Jaxon sit there for 4-6 hours if they end up doing a transfusion while we are there having our follow up with her surgeon. About 1/2 way up to Primary's they called me back and said that the doctor's are not ready to infuse her yet. Let me explain that on a normal person, anything under 20 usually means a transfusion. This last week Ariauna's level was an 8.9 hematocrits. They have decided because of her bone marrow transplant they do not want to do any more transfusions then they have to because that just makes her little body get used to someone else's blood. So they actually want her levels to get down to a 7, unless she is symptomatic (fever, chills, pale, lightheaded, faint, or sleepy and not wanting to get up). All of those are signs she needs to be transfused now. So they will plan to draw her labs again on Thursday and see what they show unless she gets symptoms between now and then. We continued up for our appt with her surgeon, Dr. Soukup.  It went really well, she said normally after this appointment if things were fine, she would just send the patient on there way and would not need to see them again. However, because she is still on her feeding tube, she would like to see her back the middle or end of August, unless we are in MN then and if so she would just like an update about Ari. She is going to continue the antibiotic until we see her again, that is being used to help her stomach contract and to keep things moving through her stomach and intestines. She also told us we can try to start working her off the feeding tube a little at a time. She wants us to follow up with our pediatrician, but said it is really ultimately going to be up to us. She suggested we take her off the feeds during the day and see how her appetite does and if her appetite will pick up and she will eat and drink more by mouth. They also weighed her today and she was 50.6 pds. So they also want us to keep track of her weight and make sure things are staying up and not dropping. For now she said she would run the feeds for 15 hours at night and see how she does and then if we feel like she is doing well on that, then we can slowly cut her down on the hours at night. She said it would be up to us and our pediatrician and the hematology/bone marrow team rather to keep it on her until the bone marrow just to help fatten her up. I noticed just today that her little arms are feeling a bit chubby. Of course after our appt, Ariauna thought it was social hour and we had to stop by the 3rd floor to see and say Hi to any and all of our favorite nurses. She was able to see Alexandria, Camilla, Julia, Kaylee and Mary. She was so excited to see and hug them all. We also had a good visit with Holly, the child life specialist. She is going to try to work on a travel pack for Ariauna to take with us when we go on the airplane ride. She is also going to try to get in touch with the child life specialist in Minnesota and see what she can do to start helping Ari prepare. What a great team they have at PCMC. We ran home and got Jaxon and then dropped Ari off at her Special Ed class. After we picked her up we came home and got ready for girls night at grandma's house. We forgot that Ari's tutor was going to be out of town this week, so no tutor today. Girls night was a ton of fun and even though we did not get much done it was fun to visit with Sabrina, Mia, Ang, Haleigh, Camilla and Grandma.  Grandma made dessert and it was yummy :-).