Going forward…

Well I think my theory is busted… my theory about how perhaps if Ava’s heart-rate stayed low she wouldn’t get a fever.   Last night Ava received morphine every 6 hours, which definitely kept her comfortable and helped her sleep, but this morning her temp came up again.   Oh Ava.   So on rounds today we discussed that since  we have never found any real infection in her blood, and Ava has lost so much blood due to them testing her that she is close to needing another blood transfusion, we are no longer going to chase these fevers.

That means we are going to stop trying to find a blood infection and after this current course of antibiotics is done, she won’t be prescribed any more when she gets high fevers.   Going forward we will keep an eye out for other signs of infection in Ava, like markers in her blood for inflammation, or increased white cell counts…  and if there really is an infection, they will treat it.  But it does seem like Ava’s fevers are more related to her heart function – or heart failure I guess, and no amount of antibiotics is going to help that.  It’s probably harder on her to be getting these strong antibiotics in the long run.  So even though it would be nice to find a definite infection and a source of these fevers, I’m relieved that they won’t have to take more blood from Ava than they already have.

And today Ava was still fluid over-loaded, so once again was feeling awful, and it was hard to see.  I just hate seeing her so uncomfortable and we know that she can’t breath when she is like that so she didn’t come off her CPAP at all today.   They have increased her lasix and she had some great wet diapers today, and even by the end of the day seemed to be feeling alot better.  And that was great because I was able to take the girls with me to the hospital today and Ava actually smiled for Sophia, it was wonderful to see.

And while Ava was napping today – the girls and I checked out the Starlight room at the hospital.   It is on the 9th floor and it’s amazing!  I can’t believe we have never been there before, with all the time we’ve spent at the hospital.    It has an out-door patio and it was so nice to sit there and relax for a few minutes while the girls were playing.   Here is Sophia in the outdoor portion…

Sophiastarlight

And you can see how some of the rocks are painted… so I painted one for Ava. 🙂

Avarock

Jason and the boys came later too and had fun checking out the Starlight room for themselves and before we left today we all gathered around Ava’s crib and prayed for her.

It’s hard seeing our baby struggling so much… I hope there is new heart ready for her soon!!

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!

Six months old!

Wow, Ava was 6 months old yesterday!   It’s hard to believe that we’ve had her for half a year already… it actually seems like longer, perhaps because it’s been so busy. 🙂

And she is still on the mend.  She had a few more  awake periods yesterday, which was nice to see.  And although they had talked again yesterday about giving her a blood transfusion to up her hemoglobin levels which were low, they held off because they still weren’t happy about her fluid balance as they felt she was puffy and retaining too much fluid.    So yesterday, they kept working on getting Ava to pee more, and gave her more drugs to help the diuretics, but when they looked at the numbers –  her calculated fluid in and fluid out – nothing seemed to be helping.

Then last night at 3:00 am,  Ava had a big wet diaper which was great news,  and her nurse went to weigh it, but the scale said the amount in the diaper was only about 80 mls.   The nurse thought  that was strange as it felt much heavier so decided to weigh the diaper on the scale next door and guess what…  the scale in Ava’s room was wrong!!!    The diaper was more like 140 mls, which obviously meant that they hadn’t been able to get accurate amounts of Ava’s outputs for who knows how long,  as the scale was under-weighing her diapers… grrrrr.    So the poor baby had been made to pee too much, and ended up being very dry, and when they weighed her today it showed that she had lost a lot of body weight (probably mostly fluid), so that wasn’t too good, but but thankfully today they are trying to correct everything by upping her fluid intake and she did get her blood transfusion which should help to perk her as well.

She still has her cough and she still has gunk in her nose, and still isn’t feeling the greatest.   But as the nurse said today, if you or I had what she had, we would be in bed and would have taken a week off of work.  So it stands to reason that this bug has been hard to beat for our little Birdy with her not-so-great half a heart, as well as the stress of Saturday when she didn’t eat all day and had the picc line insertion, it’s just a blessing that she’s lived to tell the tale!!

But we praise God that He is healing her and for the fact that He is still laying her on people’s hearts and prompting them to pray for her.  God is not finished with Ava – but I realized today that what I really need is a good dose of hope.   I know that God is a God of miracles, and He could heal Ava and bring her a new heart, but I also know that He gives and takes away, you know what I mean?  So it’s a very difficult place to be in –  and I know there are other families who are dealing with similar situations –  a place where you don’t  know how to think or how to feel.  Are we to look ahead with hope at bringing her home some day?   Or should we be preparing our hearts (I don’t think we ever could) to let her go?

At this point all I can say is that we are looking forward to getting all of Ava’s pre-transplant  testing done so Jason and I can have a heart-to-heart with the transplant Dr’s and see what they say.  Hopefully they will say that Ava is a good candidate for a transplant, and that she is in a position to hang on for a heart, however long that might take.   If they say something different, we will just have to cross that bridge when we come to it.

Regardless of what happens going forward, the six months that we have had with Ava have been a blessing and we count each day as a gift.   But please pray that God would be gracious to us give us some tiny glimpse as to what our future holds with Ava.  Our future with our sweet little 6 month old who needs a new heart.

Momava