Day +183

Well today has been a very long and stressful day. It started off with Day Hospital. After not sleeping well again last night I got up and too a shower and got Alicia ready to go across the street for her infusion at Day Hospital. When we walked out side it was raining so I had to put my only umbrella over Alicia and I was soaked by the time we got there. When we walked in they looKed at us crazy because our appt was not until 1:30pm and it was 8:30 in the morning. I am so glad they found a room for us so I did not have to take Alicia back out in the room. Of course the sun was shining by the time we left.



Everything went well with the infusion and we came back and laid down for a nap. I was woke by a call from Dotty with Wings of Hope who is flying us home for Christmas. She told me that the Chief Pilot in charge was very worried about the weather forecast for Tuesday between here and Kansas and was scared we would not be able to go unless we left on Monday instead of Tuesday. This was already so late in the afternoon so I started freaking and making calls. Alicia was supposed to have her IVIG infusion on Monday and her dressing changed on her pic line before we left Tuesday plus I did not have enough medical supplies to last a whole week at home, they were scheduled to be delivered on Monday afternoon.


In the mist of making calls to try to arrange her IVIG and dressing changed on Sunday as inpatient and checking to see it I could get her supplies delivered earlier I received a call from Paula, our Nurse Practitioner and she told me that a test came back from the horrible nasal wash Alicia had done Wednesday and it was positive for the RSV Virus. GREAT!!!!!!!!!!!!!!!!!! She said I needed to bring Alicia over right away and she was going to receive an injection that should help. So I bundled her up once again and we went back to the clinic for a shot.


They forgot to tell me that this shot entailed a HUGE needle and that she would have 2, one in each leg. I told them that I wanted them done at the same time because I knew if they didn't the second one would be impossible for Alicia to sit through. They put numbing cream on both legs and two nurses gave the shots at once. Alicia screamed which she never does during shots.


Then it was all up hill from there. Michelle our Nurse coordinator came in and said that Dr Davies said Alicia would not need IVIG now due to the injections had it in them and that they could change her pic dressing while we were there and that we could still go home even if it was Monday instead of Tuesday. So now I am running around lie a chicken with my head cut off, washing clothes, packing , cleaning and getting ready to leave in 2 days. Her medical supplies arrived a few hours ago so it looks like the Lord is behind us 100%

WE WILL BE HOME FOR CHRISTMAS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!