Up and Down

If this journey starts to feel like a teeter-totter ride with all its ups and downs, I do apologize and honestly can say that I wish it was different!   Ava had that great day on Friday, but then didn’t have as good of a day on Saturday and then when I came in on Sunday she didn’t look great at all.  She was breathing really fast and didn’t have any energy and so I went and found someone to tell me what the Dr had said on rounds as I had missed it.   Well they hadn’t said much about her fluid balance, but when I had our nurse check it for me, Ava was quite positive (retaining fluid).

So I went and found the Fellow (Dr) who was on for the day to ask if we could give her an extra dose of lasix as Ava does not like to be fluid over-loaded .  Unfortunately this Dr didn’t know Ava and hadn’t examined her so she didn’t think that giving Ava extra lasix was in the plan, and was kinda being a pickle about it,  even when I explained that when they had switched things to give her lasix less frequently, it was with the stipulation that if she needed more they would give her an extra dose.

Now I know Ava and I know what she needs so I found myself getting a little frustrated that this Dr wasn’t listening to me, but just at that moment, the staff Dr who I had thought had gone home for the day came up to us while we were talking, asked what was up and when I explained the situation he said right away to give her another dose of lasix!   Phew… it was so nice to be heard.

But Ava still wasn’t great this morning when I saw her, and the team had quite the discussion about her on rounds today.   Ava was still positive – fluid overloaded – but she’s maxed out her lasix dose.   She doesn’t look puffy but it seems that the fluid is there, just not where it should be.   So they did give her a dose of metolazone – another diuretic that works with the lasix to help get rid of some of the fluid, but they were hesitating as they don’t want to dry her out too much.  But since this fluid balance thing just isn’t getting better,  they decided to go up on her IV heart meds – milrinone.   This is kinda scary because there are only 3 doses of  milrinone they ever give… .33, .66 and .99.   So Ava was on .33 and is now on  .66 – her heart is just getting worse all the time and I don’t like the fact that we were only on the smaller dose for a such a short time before having to move up.

So I asked the Dr if Ava was running out of time in her wait for a new heart, but he reassured me that there is always another drug they can give her, which I didn’t really find all that reassuring.    But I guess it’s all a part of buying time until Ava’s heart comes in, so we keep waiting and doing what we gotta do.

But something cool happened tonight.   We are also followed by the PACT team, the advanced care team at Sick Kids, just in case it gets to the point where Ava won’t be able to hold on till her heart arrives.   They are very kind and when they found out that we’ve didn’t have a family picture with Ava,  they arranged for a professional photographer to come to the hospital so we could get some pictures of our family.  What a huge blessing.   Huge.    Isn’t God good?  So we got dressed up as best we could tonight and had some pictures done, it was pretty amazing.

So we can honestly say that even though this journey is a crazy teeter-totter and a very stressful one to boot, no matter what hurdles we face,  God is going before us and meeting our needs like we could never imagine.  It still doesn’t mean it’s fun, or not painful, but at least we know who we can put our trust in and He’s never let us down.

I can’t wait to get the picture back of our sweet little girl!

Waiting for the Big Reveal

So we are hoping tomorrow is the day of the ‘Big Reveal’…  where we hear about what the plan is for Ava.  Will they consider doing surgery to fix her leaky tricuspid valve, so that we can hopefully get her Glenn?   Or will we just continue to wait and repeat the cath in a few weeks.  Or are there options we haven’t even considered.   We shall see.

And this morning when rounds came by I found out they found blood in Ava’s urine again last night,  so they have started her on antibiotics, and tomorrow she will get an ultra-sound of her kidneys to make sure the poor baby doesn’t have kidney stones.   Apparently one of the draw-backs to being on diuretics for long periods of time – in Ava’s case, her entire life – is that it makes you prone to kidney stones.    Oh man, I hope she just has a bladder infection!

But other than that, we had a good day.  Ava was happy except her teeth – or lack of – were bothering her and she didn’t nap that great, but I still enjoyed being with her today.

I am finding the room we are in a bit sad, even though it is actually a cheerful room people wise.  We are sharing the room with our little friend Alleeda, who is 15 months old and has been waiting for a heart since last summer.  And there is also a baby in our room around Ava’s age who has been waiting for a heart since Christmas.   The families of these kids are so cheerful and patient in face of this adversity, but I wish I could give them what they need now.     But hearts aren’t easy to come by and maybe someday I will start a campaign promoting organ donation for children, but right now we kinda have our hands full.  🙂

So please pray that tomorrow we actually hear some good news for a change and the ‘Big Reveal’ won’t be a big disappointment.

Oh – and thank you for praying for Bella!   She is so much better today – she spiked a fever last night but was started on antibiotics and is doing better.   I was able to share with her mom that everyone had prayed for her and that was awesome.

And thank-you all as well for your prayers and comments and emails… they are so encouraging, you have no idea.

We’ll keep you posted!

No plans yet…

Well I wrote a big post on my phone last night but couldn’t figured out how to publish it, which turns out is a good thing because things have changed once again today – as they have a habit of doing – so now I will write a new post here on the computer in the library.  Ava is having a nice snooze so I could run out for a bit which is always nice.

So, as of yesterday it seemed that the general consensus was that Ava was basically here in the hospital now until her next surgery.  The cardiologist was going to try to get her a new cath date earlier than the one that was going to be booked for the first of June and then surgery would get booked and we would just stay in the hospital until it could all get done.     Which in light of Ava’s decreased heart function and increased valve leaking seemed to be a good idea, especially as she has been on continuous feeds since we got here and increased lasix (diuretics).

However,  it seems the cardiologist is having a bit of a hard time getting everyone on board with this plan,  especially since Ava still does have a cough and it’s still not 4 weeks since she had influenza.    The cath people will only do an earlier cath if the surgeon will do surgery right away.  But we still don’t know if the surgeon is comfortable doing surgery since Ava still isn’t 100% and after you have an illness like influenza, it can make recovery more difficult.

So if that is the case, and we have to wait a week or two anyway, we might as well go home!  Which would be wonderful in one way, but scary in another, because now we know Ava is even more fragile then she was before and what if she gets sick again?   But there are risks to being here as well so who’s to say which is the better choice.

But in order to qualify for going home, Ava needs to be back on bolus feeds (being fed every three hours like normal) and her lasix need to drop down again to twice a day.   It will be interesting to see if she tolerates these things, because if she doesn’t we aren’t going home either.

So that is why I can say there are no plans.  There are too many variables and too many things need to be sorted out and figured out.

Please pray that this would all be happening according to God’s timing and that whatever is decided is for the best.   Ava and I are fine, it’s been nice seeing everyone here again and I’m meeting some friends today so today is going to be a good day.  We aren’t suffering at all, except we are missing our family like crazy which is a given of course.

But we will just take it one day at a time, and just chill and wait for someone to tell us what the plan is. 🙂