So poor Ava is definitely fluid overloaded again. We had such a stretch of good days that I think we all got complacent, and then WHAM…. she retained way too much fluid. So they started giving her the big meds yesterday, but they didn’t have the desired effect and this morning her weight had gone up again and her liver was bigger again. So then she received another dose of the metolazone this morning but it still didn’t seem like she was peeing, and around 5:30 pm our Doctor came in and told me that she was worried about Ava. Ava just wasn’t herself, she has been so tired today and hasn’t really tolerated being off of her CPAP at all, and her heart-rate was high. So she ran a full set of blood-work to see if anything else was going on and so I went back to the house for dinner wondering if I should be worried about her too.
So I made a quick trip back to the hospital after dinner to check on her and I was reassured as it did seem that Ava was doing a bit better. Her heart rate was coming down and thankfully her blood-work came back all normal. And our nurse tonight is amazing and one of my favourites so I could go home feeling confident that Ava was in good hands. And I just called the hospital 10 minutes ago and it looked like her fluid balance was headed in the right direction, so I am hopeful that we will once again be able to get the extra fluid off. Now if we could just get it too stay off!! But all of this fluid retention is once again a sign of heart-failure that so many of our cardiac kids deal with. There are a few of us mom’s waiting for transplant and the fluid balances of our kids is often a topic of conversation, just like it’s perfectly normal to talk about your child’s fluid in’s and out’s. And talking about other kids, I’ll give you a quick update on Aleeda; So she is doing OK. They did a CT scan on her today just to make sure everything was fine with her as she hadn’t moved her left hand, but Tanya figures she hasn’t moved it because it’s uncomfortable because it’s so puffy. Aleeda is fluid-overloaded too right now as her body is trying to get used to her new circulation and she was on so many diuretics before the transplant that her kidney’s need more stimulation. But hopefully in the next day or two they will close her chest and from then on things should get a little better every day. Please keep praying for her!
Now back to Ava – thankfully she is looking Ok, because if she wasn’t we would have to figure out a way to get Jason back here, because he and the kids left again today – this time for a week and a half at Jason’s family’s cottage. On one hand I am so happy that they get to escape the city and our small apartment here. But on the other hand I am sad that they left without me. I really didn’t like saying ‘Good-bye’ to my family again today, and what made it worse is that lately I’ve been having a hard time in general because I’m just plain sick and tired of being here.
I said to Jason the other night that I just want to be a real mom again to our kids and he responded by saying, “And I just want to be the dad again.” It’s hard when we are both playing different roles than one’s we would choose and there just doesn’t seem to be an end in sight,
The PACT team came by this afternoon (the pediatric advanced care team) and they asked how I was doing, and even though it would have been easier to fib and say OK, I wasn’t feeling OK. So I shared some of sadness that I’m feeling over my life right now. And their response was good, and they pointed out that you need to allow yourself to feel what you are feeling, and even though there are people who are going through tougher situations than we are, it doesn’t make our situation easier or less stressful for us. But even though talking to them made me feel better in way – I still felt like there was something missing, something that would say that me focusing on how bad I was feeling wasn’t the way to go.
And I realized after I got home what that was.
See, I realized this whole situation is not all about me. Or about Jason and I or Ava or our kids.
It’s about Him.
It’s about Christ.
There is a bigger picture here which is all about God and His plan for Ava and for our life. My job as a follower of Jesus Christ is to live for Him whatever place or situation or calling He has me in, and to bring Him glory as I go about doing it.
Romans 14:8 points out… For if we live, we live to the Lord.
When I first got to Toronto in May I was struggling with being here and a friend sent me this quote by Charles Spurgeon, from his devotional Morning and Evening…
Why then are we here? Would God keep his children out of paradise a single moment longer than was necessary? Why is the army of the living God still on the battle-field when one charge might give them the victory? Why are his children still wandering hither and thither through a maze, when a solitary word from his lips would bring them into the centre of their hopes in heaven? The answer is-they are here that they may “live unto the Lord,” and may bring others to know his love. We remain on earth as sowers to scatter good seed; as ploughmen to break up the fallow ground; as heralds publishing salvation. We are here as the “salt of the earth,” to be a blessing to the world. We are here to glorify Christ in our daily life. We are here as workers for him, and as “workers together with him.” Let us see that our life answereth its end. Let us live earnest, useful, holy lives, to “the praise of the glory of his grace.”
I’m not on this earth to live a fun-filled, happy and self-fulfilling life. Nor am I here to live for my family and my kids. I’m here on earth to live for the Lord, and to fulfill His plans. And when I look at it that way, I can look at my life right now with joy instead of sorrow, with a purpose instead of pain and with a peace that comes from knowing that this is not all I have, there is an eternity to look forward to where I will find rest and peace.
Isn’t that cool? And what I love even more is that God is so faithful to me that I can actually work through my faith as I blog, and God shines these truths into my heart even when I just think I’m giving you an update on Ava. Isn’t God good?
Thank you Lord for reminding me of this tonight, I can live for you!
(I’m so happy that it’s not about me, it’s all Him!!!)