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!!

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Another bump in the road

Well three days ago I took that video of Ava and she was quite happy – and then yesterday the little monkey went downhill again.   When I went to see her yesterday morning her heart rate and respiratory rate were up and her oxygen saturation levels were down.  They were worried she was getting sick, and then when they went to access her picc line for blood work – the picc was sluggish and they couldn’t draw blood back in the line.   That made me and the Cardiology Fellow  wonder if perhaps Ava hadn’t properly been getting  all of her heart medication that she gets through her picc.   She is so dependant on her milrinone that if she didn’t get enough of it over-night,  she would definitely be showing worse signs of heart failure, even if she was or wasn’t getting an infection.

But irregardless, her temp was also up, so they had to do blood work once again to see if they could find pinpoint any source of infection.   Later in the day it came up that there were some markers for infection in her blood – her white blood cell count was up and her nutrafils were up as well – but we have to wait 48 hours for blood culture results to come back.    Just to cover all her bases, the Dr put Ava on two strong anti-biotics in case there was something, because we all know that Ava has no resources to fight an infection on her own.  Towards the end of the day last night she also started de-satting again so we had to add oxygen to her CPAP, something we’ve never had to do before, so that wasn’t a good sign, but she was sleeping quite comfortably so I felt Ok to leave her for the night.

Then early this morning I got a call from Ava’s Doctor telling me that Ava didn” look great and that I should come to the hospital.   And when I got there, Ava did look quite ill, but at least opened her eyes for me and they were relieved because she had seemed so out of it before.   But she just didn’t look like herself, and the fact that she was also fluid over-loaded didn’t help.   But as the day went on she did get a bit better.  The nurses gave her some medication to help her sleep and some morphine so she would be comfortable and she slept most of the day.   Towards the end of today I actually got a smile out of her which was wonderful.   And we were able to turn down her oxygen a bit and so praise God she does seem to be on the mend, but I guess with Ava you never can really tell.

Oh my Ava!  These episodes of hers are certainly stressful and seem to take years off of my life.  But even though I cry and wonder each time if I’m losing my baby,  I also feel an over-whelming sence of peace, that no matter what happens either way, it will be OK – God will give Jason and I His grace and strength to get through it.

But where there is life there is hope!    And even though we are experiencing another bump in the road,  Ava’s journey is not over yet, God may still bring this baby a new heart!!

July 1st

It’s July the 1st and so I will say Happy Canada Day!    We live in a great country, and as you can imagine I am very grateful for our Country today… a country where we get amazing health-care without every having to worry about paying for it out-of-pocket.   And Sick Kids is a pretty amazing place and I’m proud that it’s Canadian too.  🙂

And today Sick Kids put on a Canada Day carnival for the kids, with some food and games and prizes and the kids quite enjoyed it.   I was glad the kids and Jason could come to me, because I spent the entire day at the hospital with Ava.   When I got there this morning Ava seemed really tired after having a quick cuddle with me, even though she had just been awake for an hour.  So we tried to put her down again with her CPAP on, but she just didn’t want to settle – and her heart rate kept rising.   And then of course, as always, just when you think you have your baby settled… the woman from the phlebotomy (blood-work) team shows up to take some blood from your almost sleeping baby who doesn’t feel well.   You can imagine how I felt.  So I felt that, plus I knew that getting poked in her arm would send her heart-rate through the roof and it was already high and that worried me.  But since Ava had already been given Tylenol and Advil and the blood-work had to get done, she got poked and her heart-rate did go up, but we gave her some morphine on top of everything and were able to get her settled, thankfully.

Except then we realized then that she felt very warm, and when we took her temp we saw that she had spiked a fever of 39 degrees.  Poor baby.  So we put some ice on her head and got her undressed and she finally fell asleep.       She has been having fevers again the past few days, so they have started her back up on antibiotics in case of infection.   And her blood-work shows that her white blood cell count is a bit high, so it would seem that she is fighting something, again.  Just like a week and a half ago when she had to go down to critical care.  I wish I knew what on earth was going on with her.   But I think part of the problem is that because Ava’s heart is so bad, even the smallest infection is going to wreak havoc on her.   And that makes us all worried because Ava is not really in a position to fight anything off right now.  She could really use a week or two of being well to help get some reserve back.    I am pretty thankful for her CPAP though, because once she does fall asleep on it, her heart-rate and respiratory rate goes down significantly and I know it helps her and makes her feel better.   I won’t be happy if she needs to be on it more than she can be off of it.  But I guess we will just wait and see.

She did have some smiles for daddy and the kids when she woke up from her 7 hour nap later this afternoon, so it was so nice to see her happy.  But again, it didn’t last long, and she quicly became tired and her temp started going up again and so we quickly bundled her off to bed.  So we will see what tomorrow brings for our sweet Birdy.

So here is to a new month that hopefully will bring a new heart for Ava and our friends who are also waiting for hearts… Aleeda our little friend here with us in Toronto, and a friend that we’ve been praying for in the US – Sofia – who also has hypo-plastic left heart and Turner’s Syndrome just like Ava.    We all can tell you that waiting for a new heart while watching your child’s health deteriorate is not an easy journey to be on, but we all believe that by God’s grace we will get through this, one day at a time!!!