Claire's liver surgery is scheduled for Thursday. This is good because her symptoms seem to be getting worse and worse each day. She is sooooo uncomfortable. She basically just grunts all day long. Claire has never had an issue with spitting up, and now she spits up almost all day long. She has reduced the number of ounces she is eating per day, but still gaining weight which is weird. I am wondering if this is fluid gain. I have been measuring her girth and it has increased about 3 cm in the past week or so. She has gained 11.5 ounces in a week. To me, this is excessive. I weigh and measure her the same time each night before her bath so there shouldn't be much variance caused from eating since she eats usually at the same time each afternoon.
It's so frustrating because she is so uncomfortable. No matter what way you hold her, she doesn't feel good. I compare it to how I felt when I was pregnant and felt extremely full all the time and couldn't get comfy. At least I knew what was going on - Claire has no idea. It's frustrating as a parent that we cannot console her and make her feel better. It's going to be a long few days for all of us, but especially Claire as we wait for the surgery day.
The plan for surgery is that the liver surgeon we have been dealing with the whole time will be doing the surgery. But her colleague will also be there who is also a liver surgeon at Duke. The priority is the right lobectomy (removing the right half of her liver) where all the big cysts are. If Claire is still stable once this is removed, the surgeon will then try to "wedge" out the smaller cyst(s) on the left lobe. If Claire is still stable after this, she will then repair the hernia. Claire will go to the PCICU after surgery - this is the cardiac ICU she went to after her heart surgery. She is going there instead of the regular PICU since she is still considered a heart patient. Claire will stay in the PCICU for several days until she is ready to move to the step down unit or the floor. Recovery time in the hospital averages 4-7 days.
I am hoping we can hang out in the PCICU as long as possible since moving to the floor is not our favorite place to be. But if she moves to the floor, that means she's doing well. So beggers can't be choosy!
Claire will need as many prayers as possible for the next few weeks, and especially on Thursday. Please also pray for her doctors and caregivers as this is such a rare pediatric liver disease, we don't want any curve balls. We are praying that the surgery goes better than planned. It will be a long, tedious surgery lasting about 4-5 hours. The liver bleeds a lot, so they have to be careful about blood loss. This is as major of a surgery for Claire as her heart repair. So please pray hard.
Of course, Trent is the assured one and I am once again the freaking out one. My nerves are scattered and fried. One minute I am ok, the next minute I am in tears. I haven't cried as much as I have tonight since Claire's heart surgery. I just hate how bad she feels and that I can't fix it. And then I worry about her surgery. I am not sure how other parents feel that have been through such experiences as we have been through with Claire, but sometimes you feel like you don't have any emotions anymore. You are in survival mode. I used to be a pretty emotional person. Now I feel like I have my battle armor on at all times and can't let myself get too happy or too sad. It's like you just have to exist emotionally to get through to the next step. But at the same time, Trent made me laugh this week until I cried! It felt so good to do that. I honestly haven't laughed like that since before I was pregnant or shortly after. Laughter really is the best medicine!
Please also keep Claire's friend Claire Elizabeth in your prayers. She is still experiencing lots of seizures and her parents are extremely worried. I can't imagine how scary that has to be to watch and wait and wonder. On a funny side note - the first time I met Claire Elizabeth's parents, we were discussing why we both chose the name Claire for our children. We all liked the name because it was classic and you don't hear it often. Claire Elizabeth's mom mentioned she didn't want Claire to be called Claire "G." in school. You know - like when there's two kids with the same name, you distinguish them by the first initial of their last name. So instead of calling them Claire S. and Claire G., I just like to use their middle names instead! :)
We will be updating Facebook throughout the day during surgery. Not sure if we will be updating the blog until later on that day or evening depending on if I remember the laptop or not or if one of my sisters can update it for us.
The Scott Family