I was hoping for snow on Christmas but while the weather in Boston was calling for a chance, apparently it is like back home and only accurate some of the time.
I was extremely frustrated with the night nurse last night when Sara woke at 3:30am writhing in pain. Anna had done such a good job of keeping Sara's pain under control throughout the day. I told her "you need to wake her for her pain medication." She responded "I didn't think she was getting much." It had been 6 hours since she had Tylenol and 10 since Ibuprofen. Those are the only pain meds we are doing right now and she had absolutely nothing in her system. It took me a half hour to calm her down...one ticked off Mama! I was at the nurse's station at 7:15am to make sure they were prepping for her next dose.
We started the day with a visit from the doctor and his team of 2 following behind. He asked how Sara was doing and I ran thru the list of improvements from the day before. He didn't even look at her belly, just talked to me. The first thing he said was "I am ordering more labs this morning to check her potassium levels" to which I pushed back with "Come on, really? She has had such awful experiences here with blood draws. Is it really necessary?" I think I totally caught him off guard because he just stood there staring at me and didn't say anything for a moment. Then he asked one of the other doctors what her levels were yesterday. 2.3 Apparently 4. something is normal. He agreed reluctantly but said if she threw up again he was ordering it. As he was walking out of the room, I mentally stuck my tongue out at him. The nurse confirmed that she thought her potassium was better and showed me another indicator through her heart wave pattern on the monitor.
I ordered breakfast for myself...I mean Sara (if I order like Sara is eating it, then I get a free meal!) and then we walked to the bathroom. I moved the wagon cart out in the hall and for the first time she walked from the bathroom to outside her room! We headed down to the lobby for a change of scenery while my breakfast was being cooked. I got snagged by security for not having a name badge on, even though I haven't been out of the hospital since walking in on Friday at 6am. What day is today? We headed toward the cafeteria and spotted 3 different Thomas trains.
Nurse Ruth decided to take Sara off the monitor and just periodically hook it back up to check her vitals. A step in the direction of reducing the amount of equipment she is attached to.
Back up in the room for some rest. I had the curtain to her room window open so I could see Shannon and Adam coming. I excitedly waved to them. Adam started beaming, then tripped and I saw his face disappear as he did a face plant on the floor. Up he popped and ran thru the door to give me a hug and kiss.
After a bit I got a break to take a shower. I had been in those clothes for 2 days and it was the first time I curled my hair since last Thursday. A few laps in the cart before lunch and some walking. Shannon ordered food in the room with Adam and I took some time venturing out to eat in the cafeteria by myself. I was very excited to have such an awesome Christmas lunch meal. It was hot and actually tasted like homemade food.
Sara thought she might be up for some food and ate 4 bites of jello! Finally at 2:00 we got both of them asleep for a nap. I napped myself...or passed out might be the better terminology...until Sara woke me at 4 crying she had to go potty. Unfortunately she had already had an accident in the bed. Because she was still half asleep she was hysterical crying about it, wouldn't open her eyes, etc. These are moments when I can tell she is feeling better because she reacts with some of that 3 year old drama that she is so good at. She fell back asleep and at 5:15 we decided we needed to wake both of them.
We ordered dinner and thought we would go for another ride while the food was cooking. This time we decided to park the cart at the nurse's station and let Sara walk
back to her room, about 5 or 6 rooms away. It was a long walk for her
but she was cruising and holding onto one of her teddy bears. Her spirits were great, she was talking and smiling. These past few days Adam really seems to bring that out in her when no one else can. I think that walk was a little much for her as it made some nausea set in which required meds thru her IV to calm her tummy. We opened her Christmas presents for her but since her tummy was upset she was having a hard time being excited.
Once her tummy perked up I called both sets of grandparents to tell them Merry Christmas. I am sure it was very unexpected for them to hear her voice, however soft it may have been. Sara also decided that she wanted something else to eat. She nibbled on a graham cracker while I sat on her bed and told her stories of when I was in the hospital giving birth to she and Adam. She listened intently and smiled when I told her they wrapped Adam in bubble wrap to keep him warm.
It was a day of more positive strides. Less nausea. More walking. No fever. My restful heart rate and BP. Better bowel sounds. Lots of poop, even though she had a few accidents. And the lower lobes of her lungs were no longer collapsed. Still lots of progress needed to get home safe but we are so much better than a few days ago.
Looking at Sara sleeping, she is peaceful. Finally she is sucking her thumb. For days there have been so many things hooked up to her that she hasn't been able to and even when she was freed, she got frustrated and would say her thumb didn't fit. I know I have been trying to break her of the habit during waking hours at home. But if sucking her thumb brings her comfort after a week like she has had, you won't find me saying no.
The hardest part about today for me was walking the halls and seeing all the empty beds. Over the weekend, nurse Anna indicated it was the busiest she had seen it in the 6 years she has worked here. Then yesterday hit and 21 out of 27 beds are now empty with kids being able to go home for Christmas. At least we are all together as a family. You know, before we left for Boston my life was so chaotic and really has been the entire year. I have felt very tired and weary with trying to manage extra things in my schedule and just not being able to keep up on everything. I was constantly pulled in so many directions. Then we got on a plane to come here and it's like having tunnel vision. I have no idea what I was working on at home. All the things that were so urgent before suddenly aren't. The laundry and the housework and the deadlines have all faded away as I am focused on caring for Sara in our little 1 room apartment that is 10 South, room 114. So in that regard I am very thankful for this Christmas. It's not about presents or lists of things we have to buy. It's about family and perspective of appreciating where we are. I will never forget this Christmas because of Sara's surgery. I am also hoping I will never forget the perspective it has brought me about what my Christmas focus should be.