Well thankfully this morning Ava is feeling much better. They finally managed to get some fluid off of her and so her fluid balance is less positive and her liver is back down to a normal size. Basically Ava is struggling with heart failure and all that it entails. I actually looked up heart failure so I could understand better what was going on with Ava, and now you can too because I”m going to share it with you. 🙂
So… congestive heart failure as defined by the nice people at MedicineNet….
Congestive heart failure (CHF) is a condition in which the heart’s function as a pump is inadequate to deliver oxygen rich blood to the body.
So there you have it. Ava’s little heart is doing such a terrible job, that she’s not able to properly profuse oxygen to her entire body and this causes alot of problems. Here are some of the problems as explained by them…
- The weakened heart muscles may not be able to supply enough blood to the kidneys, which then begin to lose their normal ability to excrete salt (sodium) and water. This diminished kidney function can cause the body to retain more fluid.
- The lungs may become congested with fluid (pulmonary edema) and the person’s ability to exercise is decreased.
- Fluid may likewise accumulate in the liver, thereby impairing its ability to rid the body of toxins and produce essential proteins.
- The intestines may become less efficient in absorbing nutrients and medicines.
- Fluid also may accumulate in the extremities, resulting in edema (swelling) of the ankles and feet.
So you can see that trying to keep Ava healthy and happy until she can replace her terribly functioning heart with a new one is a lot of work and a very fine balance. Yesterday, she was so fluid over-loaded that she just couldn’t breathe without her CPAP on, so she was only off an hour or two in the whole 24 hours period. And then not being able to breathe makes her so tired. Even now she can’t do much more than have a quick cuddle and give out about a dozen smiles before she is just pooched and she needs to go back to bed. She hasn’t gained weight in ages, she is still hovering right under 6 kilos… so right around 13 lbs. She’s probably the same weight she was when we arrived almost 2 months ago in May… poor baby. So she is just a wreck. And it’s hard because we know there is no way she can get better without a new heart and since heart’s are hard to come by, we just wait and by God’s grace we are getting through this as best we can.
Thankfully for our family, my mom and dad took 3 of the kids home with them this week so that they can run wild and free like little children should and not be cooped up here in the big city. We kept Sarah with us because of her diabetes, but she is thrilled to be like an only child for a few days. It’s just good for everyone, because I can spend more time with Ava at the hospital without feeling guilty that I’m neglecting the kids here and Jason can have a break from being the primary care giver to four very active healthy children.
Through this we can say that God is good. We are so grateful that never once He has asked us to do this on our own and He is always reminded us that He cares for us and Ava!! It sometimes seems like too heavy of a burden for us to bear… but I was reminded again of one of my favourite passages of scripture that I’ve shared before…
Isaiah 41: 27-31
Why do you say, O Jacob,
and speak, O Israel,
“My way is hidden from the Lord,
and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.