“But no matter how much she stretched, she could not touch the moon. “Papa,” said Monica to her father, “please get the moon for me.” -Eric Carle
Days start early at the hospital. At 6:30, Dr. Ovchinsky came in to examine Ana and give me an update on her latest labs. So far, everything looks great including her liver function. Her white cell count is a bit high and she’s producing copious amounts of fluid from an abdominal drain. Dr. O said sometimes this fluid can get infected and this may be the case with Ana. It’s nothing to be concerned about (she assured me) but they will be starting her on antibiotics to treat this today.
The drain sounds alarming, I know, but it’s really not as scary as I’d anticipated. It is placed in all liver transplant patients and is intended to collect the fluid build up in the abdomen after surgery. Since Ana’s tumor was so large, and the new liver is much smaller since it is just a partial graft, this causes more fluid (the reason for this is not completely understood). So this drain had to be emptied at least once an hour, and even so it leaked many times. The nurse had to change the dressing around the drain and her bedding and gown multiple times throughout the night – which equated to a pretty poor night’s sleep for both of us. Whatever – the ICU staff is pretty much doing everything and that is making it easy for me to sit and relax a lot more than when Ana was at Westchester. The fluid output should lesson over the next week or so, although sometimes patients do go home with the drain.
One of the surgical residents came in this morning and removed the dressing from Ana’s incision. He said it won’t be replaced with a new one. It is difficult to see the incision because it is covered with steri-strips (small white bandages a bit thinner than ordinary scotch tape). It looked surprisingly good. I asked the resident if the scar would be worse because they had to open her up again after the transplant when she had the clot. He said that they actually had an opportunity to make the incision more cosmetic the second time around, since they got a better look at its shape. He also said that since the skin was somewhat loose due to being stretched by the tumor, she may experience less pain than is typical after abdominal surgery when the skin is tight and pulls.
Speaking of pain, right now it seems pretty manageable. The pain specialist ALSO came in this morning and said that they are going to stop Ana’s continuous drip of pain medication because she’s been so sleepy, and she hasn’t really pressed the pain button (this is a button that enables Ana to release an extra shot of pain medication every ten minutes depending on her pain level). The thing that’s bothering her the most is the central line which is in her neck. It hurts and it’s very uncomfortable. They have begun talking about taking it out either today or tomorrow. They’re being cautious because of the issue with clotting and a few other things that tend to send patients back to the OR after surgery.
Ana seems to have a good appetite (the pain specialist was shocked). She has been munching on some cheez-its this morning in between dozing. She’s back on a regular diet – a tray of hospital-issue breakfast foods showed up around 8:30 a.m. (cheerios, orange juice, a questionable looking cube of eggs..)
She is on many medications including antirejection medication, pain meds, steroids, blood thinners, antibiotics and at least one anti-fungal. I have a print out of several of the medications she’s on now which I plan on reading today. She’ll eventually be discharged with a HUGE amount of medication and can expect to be on 10 – 12 pills at least twice a day. They will taper her off most of this medication over the next few months.
She is getting another sonogram right now. The big goal for today is to get her out of bed and sitting in a chair. They may also remove the foley catheter. These are all necessary steps to transitioning her out of the ICU and onto the floor.
Today I discovered that one of the family lounges in the PICU had murals all over the wall which were from a book that was one of Ana’s favorites. It was called, “Papa, please get the moon for me.” Janne got it for Jim as a father’s day present so he could read it to her. I think she was about 7. She loved it. We must’ve read it to her 100 times. I stood in front of one of the murals and cried. It just seemed like a positive sign that we’re in the right place, you know?