Parotidectomy

Sofia's surgery went well and there were no complications. It appears that the mass that was removed was a branchial cleft cyst. To summarize Sofia's surgery experience: pre-op, best case scenario, post-op, worst case scenario.

Sofia was not able to eat anything past midnight on the night before her surgery and could only drink clear liquids up to 11am the day of her surgery. She was scheduled for surgery at 2:00pm and we were to check in at 12:30pm. We were worried Sofia would be upset over not being able to eat. Ray and I didn't have breakfast to make it easier on her if she should ask for food. She drank apple juice in her sippy cup and never had asked to eat. We were surprised, releaved and happy that it wasn't a problem for her. At 11:30 we left for Salt Lake, Ray realized we forgot her sippy cup and we turned around to get it only to realize as she was drinking it that we were past the drinking cut off time. Ray started having a coronary. I distracted Sofia with a coloring activity, she asked me to hold her cup, danger averted.


We spent a lot of time waiting before even getting started with the preliminary exam. Sofia played in the waiting room and was in muted but very good spirits. Later, they took her vitals and she got changed into hospital pajamas. They are no more attractive for children than they are for adults. We went to the next waiting area but spent almost all of our time playing outside in the hall with the wagons and plastic cars. A child life specialist found Sofia in the hall and came to play with her one-on-one with all her medical equipment. This is definitely the kind of attention/play Sofia thrives on the most.


Sofia never complained about being hungry and never asked for food or a drink. Our surgery was delayed and we were not called until close to 4:00pm. We spoke briefly with the doctor and the anesthesiologist. Sofia was polite with them just as I had asked her to. Finally she was taken in a wagon to the operating room as the child life specialist blew bubbles all around her and promised her to play with flashlights once they were in the room. She was enjoying herself quite a bit. I was surprised at how well she remembered the routine of activities that would occur as she did not act surprised by any of it when it was time to transition from one thing to the next. When we could no longer accompany her. I asked her for a hug. She was affectionate and happily told us we could get in our car and drive home. Although this was the best case scenario, I was troubled as I thought about the huge let down it would be when she woke up from surgery.

The surgery was scheduled to take three hours. It went a little bit over. It was a very long day for us as we had not eaten or drank anything all day and it seemed to affect us more than it had Sofia. I was anxious to be able to be in the recovery room before she woke up because although I was trying to be positive I was picturing her coming out of the anesthesia in a similar way to when she has had night terrors and I knew it would be hard.

She was supposed to have one nurse assigned to her in the recovery area and only one parent would be allowed to go. When they finally called us to see her, I asked if Ray and I could both go, they said yes. When we arrived, four people were restraining her on the bed and she yelled and kicked. Her hair was all matted and tangle up around her head. She popped the bottle connected to the drainage tube and blood spilled all over the bed. She was screaming to that her hand hurt and she wanted the IV out. The more she complained, the more they tried to restrain her. They attached her hand to a board and wrapped it around her. This only made things worse. Seeing us was no consolation as she was so disoriented. As she struggled, they decided to transport her to her room. Ray sat on the bed and held her. She continued struggling all the way there, bending her fingers into the board and making things worse. I tried to fix it to no avail.

Once we got to the room, the post-op nurse took over. She wanted to give her morphine to settle her down and prevent her from struggling with everything attached to her. But Sofia had pulled out the IV and it had to be removed. Once it was removed, she immediately began to settle down. No more kicking and screaming. She truly was relieved. I was glad there was a real physical solution to her reaction. The nurse tried to discuss with me other locations to reinsert the IV. I told her it didn't matter and that I was fairly certain her bewildered behaviour would resume all over again and that it would go on for hours. She said we could wait a little before putting it in.

Sofia started drinking juice, popsicles and cheese. She was very emotional, particular and difficult but she was calmer. Her answer to all our questions was a consistent "No!". We put a movie in to try to distract her. Soon, she started falling asleep. She was fighting it but started drifting off. At that point it was clear that she didn't physically need morphine for pain and I asked if we could forgo the IV. The doctor on call said no. The nurse nicely said she would wait to put it back in. When the issue arose again. I decided to refuse the IV. The doctor relented and it was the right decision. Sofia went to sleep around 11:00pm and slept well until 6:30am. We gave her oral pain relief and antibiotics which I promised the nurse she would take well. The first dose took some prying but Sofia was great at taking all the rest. The nurse was super accommodating and only took her vitals a couple of times during the night instead of every 30 minutes. This really helped as it was struggle just to get the oxygen monitor back on her toe. Even her id bracelet had to be cut off as she complained that it was hurting her.


Sofia woke up in very good spirits the next morning. She wanted her blood pressure taken on all her limbs, nothing like the night before. We spent our time playing in the room, walking the floor, watching movies and eating.

Sofia remembered there was a toy room and requested to go first thing in the morning. She made friends with a little boy playing bowling. She invited him to come with her to get a slushy. It was so very cute.


At times, Sofia would get a little princess like having quickly figured out that everyone there was trying to cater to her every whim. At times, she wanted to go home. I think only when she thought about the medical things. But mostly she was an excellent patient the second day.


Today we are at home monitoring her drain to see if we can have it removed soon.

Pre-surgery preparations

Yesterday, Sofia attended a pre-surgery orientation at Primary Children's Hospital. It went as well as can be expected. She refused to wear her name tag and required a lot of coaxing just to get her in the orientation room. She wanted to ride one of the wagons parked outside instead. She finally agreed to let me put her name tag on her leg. My small feeling of success was shattered when she let out a screeching cry five minutes later while the nurse was talking to the group. Sofia, of course, was trying to peel it off and apparently the hospital uses name stickers with super-glue.

After a video about what to expect during surgery, we were divided into a parents' and a children's group. Ray joined Sofia in the children's group just on the other side of the room. She didn't want to sit on the floor with the kids so she sat on a chair with her daddy. The nurse went over everything that would happen again before and after the surgery. She gave the children each a doll and some medical instruments to play doctor with. Sofia, of course wanted two dolls and demanded the one in the blue gown. She threw a little fit when she got one in the aqua gown. She also tried to steal another boy's doll several times. She kept just having these mini fits and acting a little bit more --what would you call it ... non-compliant than we are used to, at least as far as her public behavior. I think she was tired, nervous and emotional about the whole situation which is still difficult for her to process. After this, we went on a tour of the areas she would spend time in. She was pretty well behaved during this part but made sure to mitigate her interest with displays of disinterest here and there for the record.

On the way home, I tried to see if she wanted to talk about the surgery. I told her that the surgery was for the doctor to take out her "bump". She said, "but they'll poke it". She also told me she didn't think they should take it out because it was dirty. Dirty like ... poopoo. I think maybe she thought that might be a good deterrent to keep them from touching her.

Later that evening, I encouraged her to play doctor with the all the stuff she got at the hospital. She was very interested in doing this in the safety of her own home. At one point, she covered the entire doll with the blanket. I told her we couldn't cover her face because then she wouldn't be able to see or breath. "But she doesn't have any eyes, mommy. She's just pretend". Seeing as Sofia's advanced intellect required more realism than the faceless doll, I volunteered Ray to be her patient. She quickly put on her doctor apparel and grabbed her insect collector tweezers.

Gymnastics

Last Saturday, Sofia's Little Gym class showed off all the skills they've learned. Sofia participated ... sort of, in her own way that she does.

"Dude, there's some hot mamas here.
Man, I wish they hadn't dressed me in this dorky pajama."

Sofia's routine took a bit longer than the other's since "panda" had to perform everything first.

Sofia has only been to a handful of classes and most of the time she acts like she's too important to actually pay attention to what you're supposed to be doing. So I was quite surprised that she was able to do most of the tasks, albeit on her own time table and with sporadic movements and noises in between just to keep us on our toes.

Ta-Da!

Unfortunately, Sofia didn't accept her medal as gracefully as she should have. She decided to shoo it away as it was presented to her. But I have to give her credit for her ability to very astutely gauge the quality of her behavior. When the class was over she asked if she could have a half ice cream.