So we are home again! The cardiologist came to see me about 4:00 pm yesterday afternoon and said that all was well, both he and Toronto were happy with Ava and we could go home. She had tolerating all her feeds perfectly after we moved her ng further down, and even though her blood pressure is still a little too high, they have increased the dose of one of her meds so hopefully that should help. I was a little nervous about the increase because she was on the highest dose of that drug already for her weight and now we have to worry about kidney damage… yuck. But as my mom says, there is no such thing as a medication without side effects and the reality is, little miss Ava is on a lot of meds, but at this point there really isn’t much choice so we just have to hope and trust that they aren’t ruining her rather than helping her.
And I think that I can say that I learned a few things through this. One is that I have to make really sure that Ava isn’t being stressed in any way. I think in bringing her home I was a little bit too relaxed in that she seemed so healthy and I was sure she was going to be fine. But it’s just a reminder that I have to watch her like a hawk and keep better track of all the things that are going on with her so that patterns are easily identified – and through those patterns I can catch things quickly before they become big problems. Thankfully it wasn’t a big issue that brought us to the hospital, and a quick tweak seemed to fix it so that was very good, but I would rather avoid going there all together if possible. It’s funny in a way, because the nurse practioner from Sick Kids had said to me just the day before that often these little single-ventricle babies have to make trips to the hospital in this ‘inter-stage’ between surgeries to get a tune-up. They are there for a couple of days and then they go on their merry way again and hey – in the grand scheme of things, there is nothing wrong with that.
So we are home and back to our routine and it’s weird because now I seem to fully wake up at 3:00 am and have a hard time going back to sleep after I’m done feeding Ava, go figure.
And on another note, things seem to be moving in the right direction for getting Sarah back to school. Jason met with a nurse from the CCAC yesterday so they could access Sarah and I think at least for the first bit there will be a nurse that goes to Sarah’s school at lunch every day to help her check her sugar levels. And today a public health nurse is going to the kid’s school to do some training with the staff on diabetes so Jason is going there for that as well. Training of the staff is the biggest hurdle in getting her back, as they all want to feel comfortable with her and want to know what signs they should be looking for in terms of sugar highs and sugar lows. So I’m so glad this is happening because we certainly don’t want them to be worried all the time!
So hopefully things should all work out well and Sarah should be back to school on Monday, although I don’t think she has minded her extended vacation. And poor Sophia is going to miss Sarah so much! Those two just play all day together and it will be sad to have to separate them. It has been cute though, they play they are nurses, or that Sophia is a mom with a baby in the hospital. And once I even over-heard Sophia say, “Pretend that I have diabetes… ok?” Oh dear, well maybe not so cute after-all.
And then next week Sarah and Jason are going to meet the London diabetes team as our care has now been transferred from the team at Sick Kids to London. Oh so much going on! Once again, I am so grateful that Jason is managing Sarah through all of this! I joke that sometime soon we are going to have to cross-train on the girl’s care, but for now I am so relieved to leave all the carb counting and insulin injections and appointments to him.
So that is where we are at. And can I say yet again, that everyone’s support and concern for us has been so encouraging! We feel so loved and cared for, we are so blessed to be part of such a caring community and we appreciate it all so much. And hopefully we stay out of the hospital for a while, because it really is good to be back!