PICU – Day 4 – 7:40 p.m.
It’s been another sleepy day for Ana, but even so she hit a couple of milestones. The biggest and bravest was that she got out of bed today with the aid of a physical therapist and sat in a chair for about ten minutes. She even smiled a bit while sitting in the chair. I think she was proud of herself.
Ana is either experiencing minimal pain from the incision, or tolerating her pain very well, so they turned off the slow drip of pain killers and now she is fully in control of the pain medication she gets (or doesn’t get) using the “pain button” when she needs it. She hasn’t really used it all day, except when the nurse or someone else reminds her to use it. It sometimes gives her a headache and makes her nauseous. I’m kind of waiting anxiously for the pain to hit her. I don’t know if she’s not feeling it yet because there’s still a lot of pain medication in her system or if there’s a grace period (of sorts) right after surgery where she doesn’t feel the soreness. It could also be that she’s just not moving around much and once she starts to walk around, she’ll really feel it. Worry, worry, worry, worry.
Dr. Kato came by this morning while Ana was getting her ultrasound and said that everything still looked clear (BIG EXHALE). Each time she has an ultrasound, I hold my breath. Dr. Ovchinsky was also in the room at that time and said Ana’s morning labs looked really good and her liver function is improving. There was some talk about removing her central line and switching her from the Hparin drip to Lovenox, which would enable her to leave the PICU, however, as of now I have had no updates about either of these things (and it’s now 12 hours later). The night nurse did say the central line may be removed tomorrow.
Ana is still quite sleepy and unable to really do much except doze and move around in bed (mostly at the nurses’ request). She often asks for her ipod, but then falls asleep with it in her hand or in the bed. At one point today I asked if she wanted to text anyone, but she shook her head. It’s difficult for her to concentrate when she is so mentally and physically exhausted. I think she just likes checking her messages and looking at Instagram so she can feel connected to people, but she’s not ready to reach out just yet.
As for me, I’m actually doing okay. I’ve managed to shower every day and I’m getting some sleep – though it’s not enough. I have learned that it’s okay to walk out of the room for a few minutes if I’m overloaded. I did that twice today – once when Ana got her catheter removed (another milestone) and once when she was very angry at something and kind of directing it at me. I could feel myself taking it personally and wanting to cry, so I just said I’d be back in 20 minutes and I went to the lounge area to read (and cry). It helped. When I got back, Ana was asleep and I felt somewhat recharged.
Oh and there was one other thing that made my day today. I was standing outside of Ana’s room and one of the PICU residents approached me. I couldn’t remember specifically who he was, but he asked about Ana. Well, it turned out he was on the floor the day of Ana’s transplant and he’s the one the radiologist approached about the clot in her portal vein. He wasn’t even assigned to Ana’s section of the PICU, but he helped get all the balls into motion (e.g., calling the surgeons and Dr. Ovchinsky) to get them back to the O.R. immediately. He said, “That was some amazing parenting you did that day. I can’t believe how well you held it together.”
I couldn’t believe it! I was like, “Oh my god! You are the doctor that I yelled all those orders to!” I had completely forgotten about that. During the incredibly wild half hour that surgeons, nurses, residents and fellows were scrambling to get Ana to the O.R., he was trying to explain to me what was going on. I remember he started talking about the portal vein and the liver and I cut him off and said (yelled), “I know what the liver does! You need to understand that I have been approved to be her donor and if ANYTHING goes wrong, I am ready to be her donor. Get Dr. Samstein on the phone and tell him this is going on.” (Dr. Samstein would’ve been my surgeon if I was her donor). He said, “Okay.” I then turned to the surgical FELLOW and said, “I can NOT lose her. Fix this.” Because, you know, adding pressure to an already stressful situation is always the best course of action to take. I said other stuff too – asked questions, tried to clarify exactly what was happening and how serious it was. Then I burst into tears when they wheeled her away because at that moment I was completely ALONE – Jim, Amy and Janne had left about 40 minutes earlier.
Hmmm… am I a great mother or the queen of drama? It’s a fine line…So…yeah – it was good to hear that he was impressed with my parenting skills because in the version of that night that keeps playing out in my head, I came completely unglued.