Thank-you to everyone for praying, we so appreciate your prayers and kind words of encouragement.
Praise God they decided this morning that Ava didn’t need to start the second heart drug after all! A few days ago I mentioned that we were starting to find blood in Ava’s diaper. We thought that perhaps it was just her blood thinner levels being too high, but they came back normal. So the doctor and I discussed it and we decided that at this point we weren’t going to run more tests to try to find out what was causing it, because we weren’t likely going to treat it. Usually treating bowel stuff would mean that Ava would have to go without food, she would have to start being fed intravenously and she would have to go on antibiotics… and all these things would be so hard on her.
So not only did she have blood in her diaper, Ava has been doing some retching for the past couple of days and yesterday she even vomited. Feeding intolerance can definitely be caused by worsening heart failure, so that plus the fact that Ava’s kidney’s are having a harder and harder time moving her fluid, made the doctors concerned enough to think that they needed to introduce the other heart med.
However, yesterday we started wondering if maybe her feeds might be causing some of the problems. So we went down on the concentration of her milk yesterday afternoon, and praise God there has been no more retching or vomiting or blood! So maybe all of the digestive issues were being caused by milk that was too rich for her tummy, or maybe it was something else that we’ll never know about. But since Ava was doing better with her feeds this morning they felt OK to hold off on starting Ava on the dobutamine. They are going to save that in their back pocket for when they really need it.
So that was great news. But Ava still didn’t have a great day. Her hands and feet were still really blue today and she was tired and even though they keep trying to make her pee, her fluid levels are creeping up again. My mom came up today and Ava smiled for Oma, but just didn’t really have the strength to do anything but sleep today and couldn’t be off her CPAP for too long before she started looking like a fish out of water, she just couldn’t breath without it.
My goodness I’ve shed so many tears lately! This is one crazy life and I don’t know if I’m coming or going or if I feel happy or sad.
So I’m going to take a few days off. My parents have graciously offered to come and stay in Toronto so they can be here for Ava. And I am going to leave her tomorrow and go and spend a few days with my husband and my other four children, who haven’t seen a lot of their mom lately.
It’s hard to leave, but the nurses and doctor’s and friends have been encouraging me to do so. And it will be wonderful have some time away from this situation to gain some perspective, and hopefully return in a few days with a renewed sense of strength and purpose.
So if you don’t hear from me, don’t fret. If anything major happens I will be sure to let you know, but if things stay relatively the same with Ava I will write again towards the end of the week.
Thanks so much for your understanding, and again thank-you for your prayers, God is listening!