I find posting updates to be quite a challenge when I feel like things change really quickly around here. In the space of a few hours every morning, we will have like 4 different senior doctors come see us and they all bring their own contradictory emotionally charged news. This is Great! Hooray! Oh no! This is bad! Oh no! This is terrible! Maybe we can do this and all will be ok! But what about this! Oh no!
They do not seem to appreciate the need for them to sum up Addie's medical situation in a short Facebook ready sentence. I want to keep people informed so I try to wait until I think i have some indication of what is going on and then boldly post. And I promise you like 10 minutes after I press Post, someone comes in with an entirely different story.
It has been 2 weeks since I had to rush straight from school to PICU and this whole drama began. And I'd love to say things are wrapping up or that we have a great understanding now of what all is going on. But things are really still pretty uncertain. And hospitals have this way of snowballing drama. So the area where she was initially accumulating fluid does seem to be 'fixed' which is awesome. However, somehow in the process we've accumulated some new problems. When the chest tube was clamped, it appeared to have allowed air in the chest which now seems to have created a space for fluid to accumulate. And in order to allow her chest time to heal, we held her dialysis or gave her poor quality dialysis for the last two weeks. And of course if she could do perfectly well on 6 hours of dialysis every other day, well we wouldn't give her 18 hours a night at home every night. And so now some of that is catching up with her. Fluid is building up in her lungs and her electrolytes are all out of whack.
So that's where we are tonight. And I don't know what we'll be looking at tomorrow. We're trying a bit better dialysis tonight and think we can help some of her issues with that. However, whether that will in turn just build up more fluid in her new fluid spot, I don't know. There's a lot of options still floating out there from another laproscopic style chest surgery to a big chest surgery to another chest tube to reverting to hemodialysis. And today we also met with the transplant surgeon who is definitely trying to figure out when and how transplant figures into all this. We are planning on really jump-starting my donor workup starting tomorrow so that we have that option more ready to roll. Since all these issues are wrapped in dialysis, getting her off dialysis is really the ultimate goal. So I guess we are just figuring out how to get her healthier, get me approved and get to a point where she is strong enough for transplant as soon as possible.
It's a strange place to be because life can be really simultaneously crazy stressful and also kinda boring. You have a few hours a day where it's full on doctors coming in and having to process insanely complicated medical stuff. And then you have hours of waiting to find out what comes next. And you are not relaxed and you are so distracted so it's not like a good time to get anything done. But time can really drag on. The days seem really long. The nights seem to go forever! I wish my life was a Grey's Anatomy episode where they could just skip ahead to the outcome and wrap up a week long drama in an efficient 45 minutes. So I watch TV, read random crap online, shop on Amazon and just find ways to try and stay distracted while we wait.
Max has had an interesting few days as well. He had an echocardiogram after Dr S heard a heart murmur but while they did hear the murmur, they said his heart looked great. So that's awesome. Then today he saw a neurologist. Which really just started a process. We are trying to understand Max's motor problems and answers about those kinds of things can be pretty hard to come by. The neurologist does believe there is a neurological basis for Max's lack of gross motor skills but does not know what it is. He is interested in looking for connections to their kidney disorder although Addie's completely different situation seems to contradict that. It's hard to know what exactly the future holds for Max in terms of when he will reach milestones and really a bunch of tests aren't going to give us great answers anyway. We adore Max, he is the sweetest little boy and we are so proud of him. We'll be getting him lots of therapy and keep seeing all the right doctors and we'll just see how his motor skills develop. If I let it, I could get really worried and upset by it so I really try not to. We have gotten through a lot so we'll figure it out whatever it may be. And he's so happy and he's home cuddling with Daddy every day and while Addie and I are up here dealing with super drama, we know that is of course a wonderful blessing.
People are praying for Addie and I know people are praying for us as well. Please pray for energy. I have never known tired like I feel now. I'm not getting anywhere near enough sleep and even though I'm exhausted, I still have to be up at 1am talking about chest X rays and really important things. I feel like living at the hospital feels like living with perpetual terrible jet lag. You just long for sleep and wish everyone around you would stop acting so full of energy and like it's not the the middle of the night. Thankfully my mom has been really helpful and we try not to miss more than 2 nights sleep and swap off some staying in the room so the other person can sleep a few hours in a real bed. And that is just the physical fatigue- how exhuasting it is emotionally is a whole different story and I don't even really know how to describe it because I've never been through anything like it. But as exhausting as you can imagine it must be, it totally is.
On a positive note, I seem to burn so many calories with all the long hours and stress that I have eaten like 8 Crave cupcakes in the past 2 weeks and at least 10 bags of Bugels and amazingly still lost weight. So I am pretty excited about attempting to set a world record for how many Crave cupcakes can be consumed in the month of December!
So that's life right now. It'll get better one day. Not sure when but I know it will. God has given me a peace that Addie will get transplanted and her life will get much better. I'd love it if he'd give me a specific timeline but for now, I do have a calm that no matter what rocky road we have to take to get there, there is hope for an easier road ahead for Addie. (and for Max too! Although Max is kinda awesome at dialysis and has a lot more non-kidney issues so transplant isn't as much 'the answer' for him as it is her). So yeah, Addie will be home again and I will get uninterrupted sleep again. This isn't forever. So we are just hanging in there for now and enjoying lots of time together, enjoying getting to visit our favorite nurses and doctors, enjoying cupcakes and enjoying having such a big audience to admire her impressive Christmas wardrobe.
Our Family Christmas Photo taken on Thanksgiving Day- Addie really would prefer her Papa to stop taking her picture and pick her up!