Praying for Normalcy

We've battled some ups and downs over the past week or so. Sofia had been on the mend, but she ended up developing a cold last week and that took its toll on her. She had a cough and apparently didn't get enough fluids and ended up back in the hospital last Thursday. Her electrolytes were out of wack. She had an abnormal EKG due to the dehydration, and she was given IV fluids on Thursday evening and potassium over night. I stayed the night with her Thursday night, and Oliver went home to be with Adelaide. Sofia ended up staying in the PICU because her cough they didn't want her on the floor. She didn't really need to be PICU and she didn't have heart issues, but I guess if she was on the pediatric general nursing floor a floor below, the cardiology staff couldn't get a her data transmitted upstairs. So she didn't really belong in the PICU, but that's where she ended up. I stayed with her on Thursday night and she ended up pulling out her IV overnight when she was about halfway through the potassium. Luckily, we were able to get her to take oral potassium, and didn't need the IV reinserted. You should have seen how pleased she was with herself for taking it out. I was kind of horrified. She stayed Friday night as well and came home on Saturday. It was clear that being rehydrated she felt much better.

We are relieved she is feeling better and we're trying to get back to normal. There are some things that we are dealing with still. It was discovered that Sofia has gallstones. Yeah, that's right. Diuretics can cause them or her being cyanotic could also have caused them. I think Dr. Edwards believes it is related to the cyanosis. I don't know if gallstones can ever resolve themselves or that we just hope that they don't cause her problems. (in a family where her mom, aunt, and grandma all had their gallbladders removed, I fear for her gallbladder). For now, we'll just see how things go. Her liver also felt enlarged a few times throughout her hospitalizations. I think this is probably related to the pleural effusions (fluid around the lungs). Her liver appeared to be normal sized when she had an ultrasound and her liver function as seen through blood work has been normal. I will talk to Dr. Edwards about this at her next appointment because Oliver took her to the one yesterday. I pray this is also something that will just be resolved over time as she gets further out from her surgery.

Giving her medications has become a struggle. She is still on 2 diuretics and ibuprofen, which she takes pretty well. We dread the potassium because she can't stand it. We were able to switch to a pill form of lasix because she was absolutely refusing it, despite mixing it in juice or trying to get her to take a syringe. The pills are very tiny and she swallows them down easily. The potassium pills are much bigger and no matter how you cut it, they are nasty. The liquid is apparently nasty too. So we're working on this. I fear that so much control has been taken away from her that she is just trying to get control where she can get it. She was only on aspirin prior to surgery, so it is difficult for us to follow a close regimen of medications, and I hope that she will be taken off these soon.

Her heart function is good. She had an echo yesterday. I'm relieved that most of these bumps we've had are aren't cardiac related, but I'm still down that we're having bumps at all. She has no more fluid around her lungs and just a tiny bit around her heart, which is being treated with the ibuprofen.

I didn't go to her appointment with Dr. Edwards yesterday and I regretted it. When Oliver came back and told me about her liver, I had anxiety. I felt better after talking to Dr. Edwards over the phone today, but realized that I still need to be going to her appointments. There is too much getting lost in the translation, if you know what I mean. It's hard because I've used so much of my sick and vacation time and am really getting to the end of it.

On Thursday, it will be 7 weeks since her surgery, please say a prayer for us. I was sad to hear that Sofia's former roommate, Margaret, has not yet been released (she has had prolonged fluid issues), so please say a prayer for her too.