Poor baby….

Oh our Ava.  This morning I got a call from the hospital at 5:00 am to tell me that Ava wasn’t doing well again.   I made my way over where I found her once again with an elevated heart-rate, a fever and on oxygen with her CPAP.   They had already given her morphine and had put ice on her head, so her temp was already coming down and she seemed much better quite quickly.

When the nurse practioner came to examine her at 9:00 am, she found that Ava’s liver was huge and congested with fluid, and so it seems that Ava is the poster child right now for congestive heart failure….   her heart can’t move blood around effectively and fluid is backing up in her liver.     Ava had been given extra diuretics on Thursday and yesterday afternoon it really seemed like it was working, as she appeared to be feeling better and actually smiled for me.   She was awake and content for a bit as well,  so we were getting hopeful that things were looking up.

But I guess when that when that drug wore off last night, the fluid started to back up again.   And unfortunately I really think that when Ava’s liver is huge it hurts her.   There is another mom on our floor whose daughter is 12 and is also waiting for a heart,  and she said that when her daughter’s liver is huge,  it makes her daughter cry it hurts so much.   And Ava today seemed to be in pain, and when she was awake she was whimpering and crying and was very hard to settle, even with morphine.  And it breaks my heart but she doesn’t even like to be held when she doesn’t feel well…  and that makes me feel helpless.

I don’t normally go back to see Ava after dinner, but tonight I did in case she woke up again and was unhappy and hard to settle.   But I was pleased that when she did wake up she wasn’t upset, and even though she still looks puffy she seemed way more comfortable.    She sat in her bouncy chair and I gave her some milk to drink, and then she actually did let me hold her for a while, which was so wonderful.   And then she wanted to go back to sleep.  Her heart rate was low and her sats were great and she settled quickly,  so I am hopeful that she will have a good night tonight.

This waiting is hard!  And it’s taking its toll.  I’m feeling a little down….  and I think Jason and I are both a little afraid of what might be coming.  But then I don’t really want to go there when Ava just might rally and God might send a heart.    I sent out a prayer request to our church today and I’m so thankful for people praying and like I keep saying, we don’t know what the Lord has in store… and we know He’ll see us through.  But this not knowing and living the reality of that each day is exhausting.

So please keep on praying for our poor baby, and pray for us as we wait.

Congestive Heart Failure

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.