The latest is that yesterday's x-ray shows that the fluid buildup is gone. She is back to normal, stomach flat, and off the IV Lasix. She is now taking an oral liquid Lasix three times a day, and from what we understand, will continue to do so at home for perhaps months. They are keeping her in the hospital as a precaution, to make completely sure that she does not revert and start to accumulate fluid again. I am hoping that she gets out today, but suspect it might be Monday. One piece of bad news is that the line in her arm has finally failed. My rudimentary understanding is that these lines have a limited shelf life, especially for being able to draw blood. That means that as of last night, her twice daily blood draws are now with a needle, which needless to say is not a happy time. The nurse just stuck his head in to introduce himself and let me know he could wait till 9 for the blood draw. As soon as he left, I was peppered with questions from Erin about what labs are, what they measure, how long it takes, etc.
Dr Jeff told me yesterday that he is less concerned than he was originally over whether the ASD fix is sufficient to allow her heart to work properly. The right chamber is seeing a far larger flow of blood than ever before, and we can only hope that it can handle the workload.
I cannot say enough about how well Erin has handled this ordeal. Ordeal is relative, because there are a lot of very bad things happening on this floor, far worse that what Erin has had to go through at any time. It is emotionally draining just to walk onto the ICU unit. Every time I leave her room to go run an errand, it's like going through an emotional gauntlet. Even so, Erin's stay has not been without its challenges for her, and she has for the most part handled things beautifully. It is hard to keep a 4 year old cooped up in a small room for 4 1/2 days. She has handled things with great dignity and an upbeat attitude that is inspiring. She is far tougher than I will ever be.
We did get out for a bit yesterday, as they finally let her leave the floor to go to the playroom. In the playroom, we found a face painter and Erin had a beautiful butterfly painted on her face. Afterwards, we played together in the fire truck that adorns the 12th floor entryway. Erin has quite the imagination. she creates elaborate scenario's that she expects one to follow. Yesterday involved her being captured and kept in a cage. I had to get to her at one point by encountering a troll, where the only way around the troll was to jump over him. I was laughing too hard at her elaborate descriptions of the scene to concentrate on what my task at hand was, for which I was severely admonished.
Let's hope we get out of here today. We are all at our limits.
 |
| Great attitude |
 |
| Aunts Colleen and Mo, Uncle Mike and cousin Megan |
 |
| Note the 100 in the upper right - finally after a lifetime of 84's |
 |
| She used to sleep like this as a baby, giving the touchdown signal |
No comments:
Post a Comment