PICU – Day 5 – 10:45 p.m.
It’s been another day filled with milestones for Ana. She is still very exhausted and also feeling generally unwell (nauseous, weak, uncomfortable). She is getting stronger though and actually walked about 20 steps with the aid of a physical therapist on one arm and me on the other. She got up again in the evening (very briefly). She was strong though. She walked a few steps and sat up in a chair for a few minutes while the nurse changed her bedding.
She got the central line removed from her neck too. I’m not sure who was more traumatized, me or her (or the attending physician who had to remove it.) Let’s just say that there was a lot of screaming involved and I am going to shove those awful ten minutes deep into my subconcious with all my other painful and repressed memories. I will just add one little detail regarding the nurse who was in the room with us and who has (for the most part) been very sympathetic and patient with Ana. She said “You don’t need to scream. It’s not that painful.” At which point Ana looked over at me with tortured eyes and my response to the nurse was “Have you ever had a central line in your neck?” And she said “no” and I said “Then you don’t know how painful it is or isn’t, so she gets to scream.” No one gets to tell Ana that her pain isn’t real. NO ONE.
Okay, moving on. Ana has also been switched to Lovenox and officially got her first shot at 9 p.m. tonight (yay. more pain) They are discontinuing the heparin drip at midnight tonight, which means she can officially be moved to the pediatric floor (as long as they are able to get her a room). So, fingers crossed that this will happen tomorrow. They have also gradually been switching Ana to oral medications (as opposed to I.V. medications) in preparation for releasing her. That still won’t happen likely until the end of next week (but Dr. Martinez did say it could happen as early as Wednesday).
Oh, and here’s something that will blow your mind. The nurse weighed Ana today and she was 67.9 lbs. She weighed about 82 pounds when she was admitted. Her weight was taken on the bed, rather than a floor scale, so if Ana can manage to step on a scale tomorrow, they will redo it. But even so – um, wow. Dr. Kato said he thinks the tumor weighed at least 10 pounds, but an official weight has not come back from pathology yet. I suspect she’s lost a couple of pounds from not eating all week too. She looks so small and fragile right now. I can’t wait to get her out of here and back home recovering on Jim’s home cooked meals and lots of Stewart’s ice cream.
The goals for tomorrow include more walking, more eating, more drinking (they stopped her I.V. fluids as well) and hopefully more smiles. Jim is coming to relieve me tomorrow morning and I’ll be home for the next four days or so (maybe until Ana is discharged!) So he gets the fun stuff – getting Ana out of bed and moving.