Hard to hear…

This morning when rounds came they were still being led by doctor who the head of the heart transplant program, and she knows her stuff.   She was the one who decided earlier this week that Ava should get the heavier diuretics twice a week – but since Ava’s kidney’s aren’t responding that well anymore, she now needs to receive diuretics every other day.   Anyway…

While they were talking on rounds, they decided that since it’s clear that Ava is not doing well,  they are going to try to start her on another heart drug tomorrow – Dobutamine.   It’s like Milrinone,  and if it works, the dr said we might be able to buy Ava another 4-6 weeks waiting time for a heart.    This news kinda broke my heart.     Jason and I know Ava isn’t doing well, we know her little heart is just getting worse and everyday and I can see the effect of that… but hearing an actually time-line was hard.

And it doesn’t mean the doctor knows for sure that’s all the time she has left,  and we understand that.  But I think they are just looking at Ava’s downward trend even in the past few weeks, and since it has been going downhill pretty rapidly, I think it’s fair for them to assume that at some point you have to reach the bottom.

If God is going to send us a new heart, we need it to come fast.   But in saying that, our doctor also told me today that if Ava does get a new heart now, it will likely be a slow recovery for her as her health has deteriorated so much.     Even today she is still having blood in her diaper, but they have decided not to treat it, or even find out what the problem is, as the cure would probably be harder on her than the disease.

So we are just asking for your prayers once again as we wait and trust for God’s perfect plan.

My friend Christa posted this quote on Pinterest, and so I wrote it out and pinned this up at the hospital today in Ava’s room…

20130811_214603

So even though the news was hard to hear today – we know it’s still not the end of the story for Ava.

God still has a plan and He is faithful and sure.

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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.

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!!

the Zoo

Today we went to the Toronto Zoo!     Through Sick Kids Child Life Program,  the Zoo graciously had us as their guests (free of charge) and we went and enjoyed a day with the kids and the animals.  It was good and we had a great time and it was nice to get away and spend some time as a family.

And we saw the Pandas!   Well, actually we saw one of the Pandas that are currently on loan to the Zoo from China.   The other one was sleeping inside and we didn’t want to line up to see him or her, I can’t remember which Panda this was… but it was pretty cute!

Panda

I think our favouite was the Polar bears though… it was cool seeing them swim underwater and eat their vegetables…

Polarbears

Now I’ll be honest, going to the zoo wasn’t exactly all roses and peaches and cream.  Jason and I have been realizing that our regular lives include more than the average amount of stress (really?) and so when we add extra stress (like taking four kids to a Zoo)  I feel like I don’t have much reserve to deal with stressful situations… like when we lost Will today.  Well technically Will lost us, he kept walking after we saw the penguins and thought we were behind him, except when he looked behind we weren’t there.    Thankfully the other kids and I stayed put and Jason went after him and found a rather upset Will fairly quickly, praise God, but I felt the panic rising up in me much quicker than it would have before.

So it was really nice that when we found ourselves all getting tired and cranky and hot,  we could go cool off at the splash pad.  The kids loved it and had a great time.

Will

Soph

Sarah

Erik

We were definitly blessed to be able to get away today and make some memories!!!

And then I had time before dinner to go to the hospital and see our own little elephant…. sweet little Ava on her CPAP…

Ava Cpap2

Ava Cpap

The camera flash startled her here…  sweet little miss.   It’s a little hard that Ava needs to be on CPAP so much, they have pretty much said she needs to be on it at all times, except for a few quick breaks here and there.    But thankfully for most of that time is she asleep, and when she is awake it doesn’t bother her too much and I can still hold her interact with her with it on.

When I did take the CPAP mask off her tonight, she was so smiley and happy…

Ava

But she just can’t be off it for long.     Tonight she only lasted about 30 minutes off before it was obvious that she was working too hard.   But last night in the short time she was off, I was able to feed her pears and she was drinking milk from her sippy cup!     We just have to enjoy the good times we do have with her now,  even though it is hard not to mourn the time that we are missing out on.    But we will take whatever good God gives.

So all in all,  it was a good day, making the most of the situation we are in.

Thanks again for your prayers and your encouragement… we appreciate it so much!

Waiting

This morning when I walked in the room to see Ava it seemed that a cloud had lifted… her fever is gone, her heart-rate is back in the normal range and her oxygen saturation looked great… so wonderful.   As of yesterday Ava actually seems to actually want the CPAP when she was tired, crazy baby.   The doctor on rounds this morning said these little ones figure out pretty quick that they feel much better on it and so get used to it, or even want it pretty quickly.

But still, no smiles for mommy.   I have been careful the past week to distance myself from all the negative things they do to her, like suction her, or do pokes for blood-work.  But I’m afraid that my sweet little Birdy still associates me with ouchy things since I’m always around.  But hopefully as I make sure to not be around when they happen, and then just swoop in and comfort her when they are done, maybe she will learn to trust me again.

And so in terms of what lies ahead for her, we just continue to wait.   And waiting is very hard, and very stressful.  Especially through these ups and downs and she’s experiencing. Things that frankly are surprising the doctor’s and nurses that she is surviving through.  We definitely  know that God’s hand must be upon her for her to still be with us.

So like this verse below says, we will keep waiting and trusting the Lord to keep us strong.

Psalm 31:24

24   Be strong, and let your heart take courage,
  all you who wait for the Lord!

P.S.  This next verse was the verse of the day today on Bible Gateway… loved it…

Psalm 121:7-8

7  The Lord will keep you from all evil;
 he will keep your life.
8  The Lord will keep
your going out and your coming in
 from this time forth and forevermore.

Thank you!

Once again, thank-you to everyone for your prayers and support right now.   And we also wanted to shout out a huge thanks to Jason’s sister Lija’s co-workers at the London Courthouse…   they had a fundraiser to help us out with staying at the Ronald MacDonald house and we were super blessed! !!!!  Thanks guys!!   We were really very honoured and the money will be a huge help, so thank-you.   There have also been others who have contributed financially to our journey along the way and we are so grateful.  It’s humbling to be at the receiving end but we accept it all graciously for Ava’s sake,  it’s all for our sweet baby.

And that sweet baby does seem to be a bit better.  It’s crazy that they still don’t have any things conclusively wrong with her – in terms of infection that is.   Clearly her biggest problem right now is her her terribly functioning heart, and so any infection, or even a cold or stress just escalates things to a point that almost tips Ava over the edge, as her Doctor’s so nicely put it.

Wednesday morning things seemed very dire and the outlook for Ava did not look good at all.   She had spiked a fever of 41 degrees and her heart-rate was over 200 beats per minute and there was no way her heart was going to be able to sustain that rate for very long.  They had to start Ava on CPAP to take some of the pressure off of her heart  (it’s a mask on her face that forces pressurized air into her lungs).   Unfortunately, but not surprisingly she HATES it so she has had to be sedated since yesterday morning so as not to upset her too much.  Yesterday they also put Ava on a cooling mat that seemed freezing to me, but thankfully she tolerated it and it brought her temp right down which helped bring down her heart-rate as well.  They also increased her heart med – milrinone – to the highest dose to help her heart but that is only supposed to be a temporary measure and they plan on weaning that back to the middle dose that she was on earlier this week.  She’s also on a low but constant infusion of morphine to help keep her calm and to keep any pain away.

But as of today her heart rate is back in the normal range and Tylenol seems to be keeping any fevers at bay.    She came off the CPAP for a few hours this afternoon, and then again tonight.         Tonight when she came off of CPAP, they had left the sedation wear off so I cuddled her and then when she had enough I put her in her chair, and she was actually bright and alert for about 15 minutes.   But she wouldn’t smile.   If Jason had been there she would have smiled as she always smiles for daddy, but she was being stingy with me.  🙂

ava

She’s kinda puffy still as she is retaining some fluid – always the fluid – and still really sleepy.  But at this point things are looking like she will be staying this side of the cliff that she seems to live way to close to the edge of… and I’m glad because each of these episodes seem to age me 10 year at a time.

In all of this we are so grateful to all the dr’s and nurses who have been so kind and caring.  One of our nurses who is also a believer painted the verse for Ava from my last post on a little plaque that now sits in her crib, and one of the residents who had seen that verse came by and shared she was also a Christ follower and prayed for Ava today which was so encouraging.   And both of our parents dropped everything to come down yesterday to be with us and that was so kind and the kids seem to be handling this OK as well.

And our biggest thanks is to God – our refuge and our fortress in times like these.  He alone gives us the strength day by day…

Psalm 91

1 He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”

Amen.