Day +247

Sorry I have not updated sooner. We were discharged early Thursday and everything is going well. Alicia is so happy to be out of the hospital. We had an appointment Friday and it was so hard to convince her that she was not staying at the hospital. She just kept saying " No Hospital ".


Our appointment Friday was a nightmare within its self. Of course my luck I had to get a nurse that obviously didn't get much sleep the night before ( my luck with nurses are not good lately) I am not the one to be messing with anymore and I think she realized it. It all started when she came in to do Alicia's vitals. Alicia does not like to be touched and ALL of the nurse's know this including her. Well she was insisting on pulling Alicia's sleeve up (and she had on short sleeves) and she wasn't having it. I told her to just take it over her shirt and she said fine I just won't take it and opened the door and pushed the machine into the hall. This made Alicia mad because she ALWAYS gets to take my blood pressure after they take hers. Well this nurse told her No because she would have to wipe it down if she played with it. She was pushing every button I had. I then told her that my child has had many blood pressure issues and by her not taking it she could be putting Alicia in jeopardy. She said she was not going "break" the policy. That was very strange to me because we have been here for 9 months and they have ALWAYS taken it over her shirt. Then she went to draw Alicia's blood and Alicia always gets to help but of course the nurse told Alicia No. She told Alicia to do her job and color and let her do her job and draw her blood. That was the last straw for me, I lost it. I told her not to tell my child what to do and I told her to get out of our room and send in Dr Davies.


Our nurse practitioner came in shortly after and I told her what had just happened. She got the machine from the hall and took her blood pressure (over her shirt) and it was very very high. She asked Alicia if she could do it under her shirt and Alicia let her on the first try ( she didn't just grab her and try to shove her shirt up like the nurse) With her blood pressure being high that made me even more madder. I asked to speak to the charge nurse so I could let her know what had happened and ten minutes later the Director came in instead. She assured me it would be addressed an I felt a lot better. She messed with the wrong Mee Ma.


Today we have been just relaxing and I started packing a few boxes. This excited Alicia so much. I let her pack a box also and she kept saying "we go home now" If all goes well we only have 16 days until we will be back in Kansas. I am still not getting excited yet as we all know the situation can change in a matter of minutes. When we are at the airport and out bags are on the plane I will get excited.


I want to ask everyone tonight when you are saying a prayer for Alicia if you could please include a friend of ours as well. I got a call from a very good friend this morning who's son has FA as well. He has had 3 transplants already and she just found out yesterday that his Leukemia has came back again. His name is Anthony and he is such an awesome person. Roxanne, his Mom, has helped me through so much during all of this and it just breaks my heart to know that this is happening to them. PLEASE say extra prayers for Anthony and his whole family.