When..

Just a quick post tonight… but I wanted to say that Ava had a pretty good day.   This morning when I got to the hospital Ava woke up and I took her off her CPAP and she was really cuddly, she nestled right in and I loved every minute of it.  But then it didn’t take long before she let me know she had enough and she wanted her CPAP back on again and then went back to sleep.  The second time she woke up was around noon – again she went off her CPAP and played with her toys and I took her for a quick walk around the unit.  And then she was tired again and the CPAP went back on, but she had a hard time settling down to sleeep, but thankfully was able calm down with some Advil and slept till about 4:00 pm.   She woke up quite happy and came off her CPAP again, and I gave her a bath and played with her and  then she was tired so I put her CPAP back on and she sat on my lap for a while and then she got  tired, we put her CPAP back on her and she went back to sleep!  This is story of Ava’s life right now.  She can be awake and off of her CPAP for about 45 minutes at a time, and then she spends the rest of the day sleeping.  But that’s OK.   We keep her comfortable and she is generally happy and I just pray she can stay stable until a heart comes in.

And now a little bit of news… tomorrow first thing Ava is getting her picc line rewired to a double lumen!    Which may not seem like anything big, but I’m excited by it. 🙂   Ava gets most of her meds by IV and sometimes they aren’t compatible, like the two she is getting right now.  Because right now her picc only has one line going into it, it means that everytime she gets her IV lasix, they have to stop her heart medication, flush the line, administer the lasix, flush the line and then start up her heart meds.  And now that she is on IV antibiotics, she needed to have a peripheral IV put in and that is just another poke.  So a picc line with two ports will it so much easier to get drugs into Ava, and Jason and I are really glad they are finally getting this done.

And on another note, our family is seperated again this week; the boys had day camp back at home and Sophia is back with my mom and Sarah is spending some quality time with Jason’s mom.   And so Sophia called me tonight from my parents house and in her sweet little 4 year old way asked me… “Mom, when are we going to be home forever with Ava?”  And it kinda broke my heart.   I wish I could give her answer as Jason and I want to know “when” too… but only God knows that.  So we keep on waiting!

Isaiah 30:18 (ESV)

18 Therefore the Lord waits to be gracious to you,
and therefore he exalts himself to show mercy to you.
For the Lord is a God of justice;
blessed are all those who wait for him.

Amen!

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Some pink in her cheeks

I’m happy to say that the blood transfusion yesterday did Ava some good and there is some pink in our baby’s cheeks again!    And I just want to say a huge thank-you to all of you who donate blood.  It’s one of those things that you don’t think about until you need it, but then you realize just how important it is.

So now Ava is pinker, but she wasn’t much happier today.  She seemed uncomfortable, but she does have an IV in her foot right now.   Even though she has a picc line, the picc line is being used for her heart meds (milrinone) the picc only has one lumen (port) so had to get an IV for her blood transfusion yesterday.    Sometimes IV’s are fine and sometimes they just really seem to bother her, so hopefully this IV stays open as she needs it for a test tomorrow and then we can take it out.

And Ava is also off her oxygen!  She’s been slowly weaning herself off of it for the past couple of days and so we turned it off later this afternoon.  It’s nice to get the prongs off her face and having her breath room air again, praise God!  See how much better she looks… definitely not as white.

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And isn’t that dolly beside Ava a riot?   This afternoon our floor’s Child Life worker took Sarah and Sophia off for a play and they had these dolls that she gave to the girls and they got to decorate them and then they played hospital.  Well as I was told later, Sarah’s dolly had a breaking heart… and then the dolly had cancer and got a few needles.   Sophia informed me that her dolly didn’t have a heart, but that was OK because she didn’t need one. 🙂  Oh my girls, it’s so sweet but sad at what comes out in their play.  (The child life worker and I agreed that the cancer thing is probably something Sarah picked up from living here at the Ronald MacDonald House).

When I tucked Sarah into bed tonight she had her doll and she said that the doll was better now but still had to get a needle every day.  I asked her if the doll had diabetes,  but she said the doll doesn’t have diabetes, just something similar.   Oh my Sarah!!!

We also saw Grandma today as she drove in for a quick visit and Jason and I met with the transplant team’s social worker which was very informative, so the day went by really quickly which is always good.

So even though Ava isn’t quite back to her old self, I’m glad that she is looking better, and hopefully tomorrow will see even more improvement.

We’ll keep you posted!