Fried Rice and French Fries: Update on Sadie

Sadie's surgery went well overall. We arrived at the hospital and she quickly got her vitals done and was in a room. Surgery was delayed just a bit because the anesthesiologist had some concerns. You may remember that Sadie has some mild kidney issues. Her kidneys are located in slightly different places than is typical. The left kidney shrunk in size significantly between the time she was 4 and 6 years old. It is likely not contributing much in terms of function. But her right kidney is growing well and compensating well for the lack of the other one. She takes 1 medication for mild metabolic acidosis (a kidney-related issue) but her actual kidney function is normal. There are no side effects and according to her dr - no precautions or restrictions for her. (Except we avoid NSAID's such as ibuprofen because they can be hard on kidneys). Well, when I filled out all the pre-anesthesia forms I put all that information in the appropriate places and listed the medicine, dose, etc. I included her nephrologist's contact info. Why do we fill those forms out? They certainly weren't read (or if they were, they weren't read by the anesthesiologist). He seemed genuinely surprised and concerned to find out she took this medication. So he wanted to do lab work before the surgery to check that all was good. While I was confident (based on knowledge from her other doctors) that all was fine, I still appreciated that he wanted to be careful. They did the lab work and it all came back great.

Sadie was quite the charmer the whole morning. She refused to lie down for the blood draw and said she wanted to watch. She held out her right arm and pointed and said "here's where you need to stick me.". When the anesthesiologist left me and asked if I had any further questions, Sadie piped up and said "I do". She then proceeded to ask him "Are you going to flavor the gas that makes me go to sleep? Because last time you rubbed chapstick on it?". He asked her if she wanted him to do that. She replied "no. It doesn't really help. It just makes it smell like stinky chapstick. I think it's better if you just forget that." lol!

So - surgery went well and she did great. But then in recovery and post-op, the decision was made to limit her IV fluids. Now, in the past Sadie has had a tendency to get nausea after surgery. It's generally mild though. And what her nurses have done in the past is give her extra IV fluids before discharge and that really seems to help prevent or minimize the nausea. (Which is much appreciated as we have a 3 hour drive home!). But this time, they not only wouldn't give her extra fluid, they wouldn't even give her the normal amount. They limited it pretty significantly and said they were ordered to do that because she takes sodium bicarb (her medicine). Now, they perhaps had a very valid reason for this..but they couldn't say what it was and I really don't think so. From everything I know..the risk of dehydration is a bigger risk than giving her too much fluid. With normal kidney function, she has absolutely no fluid restrictions in normal daily life. When Sadie first woke up, she was okay. In fact, she seemed to be doing really well. She drank just a couple sips of juice and then they started preparing discharge papers. As soon as she got in the car, she threw up. Then she seemed okay for a while. She had a drink in the back with her, but she didn't drink but a couple sips. She mostly slept all the way home. But once home, I started pushing her to drink and she couldn't keep anything down. She was also throwing up her pain medicine which later in the evening meant she was in pain. I called her surgeon's office and got the on-call doctor, who happened to be her surgeon's resident. He had been in surgery with Sadie that day so he knew her and her situation. I asked him to call in some anti-nausea medicine for her and he did. He was very nice and left his cell phone number and told me to call him back if we had any other problems. The medicine did the trick. She was able to finally start drinking a little and keep her pain medicine down. She slept most of the night and the next morning, she was totally acting like herself again.

My concern is that her next surgery (in 2-3 months) will be longer. I really don't want them limiting her fluid again because I'm convinced that's what made the day so rough for her. So I will be calling her nephrologist this week and asking him to send something both to her surgeon and a copy to me indicating what, if any, precautions she needs and indicating that it is okay and even needed for her to have the extra fluid. (If he agrees and I'm not missing anything. But I think he will agree). I spoke with her surgeon about it as well and he said yes, have the neph send him the info but also he can plan to keep her overnight next time to make sure she gets what she needs. So, we have a plan. :)

Meanwhile, Sadie has this lovely metal bar attached to her arm. For the first 5 days it was bandaged. She did well remaining mostly inactive, except for the fact that the night before we went to get the bandage removed, she fell down the stairs. Down 9 stairs to be exact and crashed into the shelves at the bottom! Um, that's not really a good thing. But her instincts kicked in and she fell protecting the surgery arm. It scared her more than anything and she wasn't hurt. But still..I'd appreciate it if she didn't do that anymore!

So, we got the bandage off and I got instructions for her surgeon on activity level, cleaning the pin sites, and how and when to turn the fixator for the next week. Sadie of course continued to charm everyone there and somehow left with a pile of candy! Then we went next door to see the OT's who normally make her splints. This time they were charged with making her a splint / protective cover for the fixator. The lady we were working with was not thrilled to have this task and spent the first 10 minutes telling me she didn't have any idea how to do that. But, I had some ideas to throw out. And then she finally got a co-worker to come brainstorm with her and the co-worker had some ideas. Finally a plan was created and she started creating this contraption, um, I mean splint. She did it while mumbling and muttering under her breath at first, but slowly became more personable as a workable solution started to take shape. So Sadie now has a VERY custom splint - one of a kind! The OT was in such a foul mood in the beginning that she didn't even give Sadie a choice of colors like they normally do. But that's okay, because we took the plain white splint and added some of our own "bling" to it. I have to appreciate them though because the OT's there are really good at what they do AND they know how to bill insurance the right way to get it covered. (A problem I ran into locally). And they work with the surgeon next door (who I love!). But they are not always the most thrilled to see us. I figure they should be happy to see Sadie - her needs dictate they learn new skills and expand their creativity! ha! (Of course, when it comes to OT's, I'm kind of spoiled because in my job I work with the best OT's and they manage to be good at their jobs AND be friendly!).

So, the very next day - Sadie woke up and I could tell her hand had been bleeding at the pin sites. Not a lot, but that's not really a good thing. But being so early in the process I wasn't sure if it might be normal. So I took photos and e-mailed them to her surgeon. He responded back rather quickly and said to see how it did in a day or two. If it continued, we could stop the turning of the fixator to give it more time to "heal". But regardless he wanted to start her on antibiotics. They are (as they admit) very paranoid about infections with the pin sites of these fixators. Better to be safe than sorry. So, his assistant called in some antibiotics and she started it that night.

Since then, no problems. No more bleeding or signs of infection. Everything is going well. Now the biggest challenge is reminding her not to carry or lift things with that arm and keeping her from falling down the stairs again! That keeping my very active tumbling, flipping, dancing, leaping older child from doing those things while standing in the same room as Sadie! (Which is actually a challenge her grandparents have for a few days as the girls are there having fun and being spoiled while I return to work tomorrow!). We will return to Atlanta on Wednesday for an x-ray and further instructions on when and how to turn the fixator. (There's multiple places you can turn it - we are going one direction this week..will do a slightly different direction next week). I also hope to find out a little more on how long he expects this progress might last (he can't give me an exact time..it depends how she responds).

Sadie amazes me though with her resilience, her confidence, and her bravery!

Meanwhile, Hannah's had her own little medical issue going on. She basically got ear infections in both ears the first of July. And they are just now clearing up. She had three rounds of antibiotics and then the day before Sadie's surgery, Hannah had an ENT appointment to try to get to the bottom of it. Both ears were red and draining. yuck! She got her ears suctioned and cleaned (a process she did not enjoy) and they found the problem in the right ear: a piece of an earplug had broken off and got stuck against her eardrum. I had said her hearing had decreased - now we know why! It was removed rather easily. Nothing unusual found in the left ear, but that eardrum was red, infected, and draining too. She started antibiotic ear drops which she hates! But she got through it and now her ears look better, are no longer draining, and she is definitely hearing better. We go back in a couple weeks just to double check, but hopefully she finally over all that.