Busy day, she needed two platelet transfusions, one in the morning and another in the afternoon. Alice's doctor's came to me this morning and indicated that she needs another highway for medications. She receives currently 32 IV meds; and the two lines she has are not sufficient. There was an opening in fluoroscopy last minute, before I knew it she received a PICC line in her left arm...she bleed so much, thus the second infusion of platelets.
This new line provided an opening for her to receive much needed IVIG. Thankfully she got this today. Due to her higher levels of CMV the IVIG was urgent and necessary.
She had high fevers all last night, I was very worried. The doctors changed her antibiotics today to meropenem and vancomycin. Nothing has drawn out in cultures yet.
The doctors doubled her morphine intake and scheduled her anti nausea medication more often...all this has helped greatly. Lisy came tonight--a day sooner than planned, she was settling down by the time she arrived. She soon asked mom to read her stories and sleep in her bed with her.
I ache for her. At one point in the day and after doing all I could to make her comfortable she finally fell asleep. I watched her for a while and then had an idea to make a short time lapse film of Alice's princess doll paying her a visit and kissing her on the head. I thought it turned out well enough for a first time try. In the least it helped me focus on something else for fifty minutes. I was grateful for the time. As I took her pony tail out today a handful of hair came with it. It won't be long now...... Tyler
Aunt Jessica brought Cooper by to visit and this made all the difference for Alice, she really perked up and seemed to feel better. This time-lapse shows when Alice leaves and returns from surgery and her playing with Cooper.
Natalie had an appointment with pulmonology today in Riverton, her PFT was great and she sounds fantastic. This is the first time in a very long time that we have received such happy news regarding her lungs.
Evie had a great time with the bubbles...as you can see...she couldn't stop hugging them.