Groundhog Day

So have you ever seen the movie Ground Hog Day?  The movie where Bill Murray is a weatherman and ends up living the same day over and over and over again?    Well I used to love that movie, but as my friend Tanya pointed out,  it feels like we are living that movie right now, because every day feels exactly the same as the next… over and over again.

Every day I’m at the hospital – every day I do the same thing and it gets a little monotonous.  Thankfully the days go by fast, but I’m really missing my family this week.  The nights are long without them and I miss having the kids come to the hospital to hang out with me and visit with Ava.    And it doesn’t help, but lately I’ve been thinking about what my life would look like right now if I wasn’t here…  and I just know that our family would be having so much fun with a healthy 7 month old Ava at home this summer… oh dear, I better come back to my reality.

So yesterday was good and we were all pumped about having Ava’s double lumen picc,  and they started her on a lasix infusion.. meaning that she is getting her diuretic now 24 hrs a day, which should really help with her fluid balance.     It also means that her heart meds never need to be stopped and that’s another great thing.

And everything was going well yesterday until around 10:30 am when I went to go pick up Ava and something tugged.   She started crying and I put her down to see if any wires had pulled, and I was horrified to see her new double lumen picc looking like it had been partially pulled out of her arm.   I think I almost went into shock and the nurse came running and I felt sick to my stomach because I knew what Ava would have to go through to get it put in again and I just felt terrible.

Thankfully as it turned out,  it didn’t actually pull out at all, just the securement device had pulled off her skin and the excess line had uncoiled to make it look like it had come out.    It was certainly a huge relief that it was still in place, but I still felt keyed up, and I was very very careful about picking Ava up the rest of the day.

And thankfully it does seem like the lasix infusion and everything is helping her, because this morning Ava woke up really happy!  She was awake before I got to the hospital, so the nurses gave her a bath, got her dressed and took her for a walk before I even got there, but they said that she was so smiley and she hasn’t been that way ina  while and I was very happy to hear it.

And we also got a positive blood culture today – hurrah!   Meaning that after weeks of fevers,and doing blood-work looking for some culprit,  they finally found some infection in Ava’s picc line!  But since this is a new picc line, the dr said that there could have been a pocket of infection near the site of the old line, and then when the lines were switched the pocket was penetrated.   But it’s just great to have Ava on the antibiotics for a reason and hopefully after a full course of them her fevers should finally be a thing of the past.

But unfortunately today we had a not-so-nice repeat of yesterday…  as Aleeda – our little friend from across the hall – had her picc line pulled out for real this afternoon… UGGGG!!!   As you can imagine, it was chaotic again as they had to x-ray her to see where the line was,  and then she had to get an IV put in and the IGT nurse that comes to check on Ava and Aleeda’s line got a little upset that it happened two days in a row, this time for real.  And it was just one more thing in a day when the whole floor seemed to be going crazy today – I seriously ended up with a headache just from the super-charged atmosphere in our ward today.  Isn’t that crazy?

But tomorrow I am thankfully escaping my Groundhog Dayish life and I am going home to help Jason pack up the kids and bring them back here and I am GLAD!  I will miss Ava, but it will feel good to at least get a tiny break from this life.  As they say,  a change is as good as a rest!!

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!

This little turkey…

So this little turkey… one day she has me thinking that she is not long for this world, and the next day she is happy and has more smiles than I’ve seen in a long time…

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Her uncle John and aunt Erin came to see her and she couldn’t stop smiling… (thanks guys for taking these pics!)

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I can’t tell you how wonderful it makes me feel to see her looking so amazing and so happy to boot.

Partly I think she’s doing better because they are figuring out her fluid balance and they are giving the right amount of lasix as the right time.  With her heart functioning so poorly, it’s  just not able to move fluid properly, so she needs the help removing it.   It’s very clear that when Ava is fluid over-loaded she doesn’t feel good, but when she’s balanced she feels better!

She still is needing oxygen as you can see, and I wouldn’t say that she is getting ‘better’, but she is rallying and just to be able to keep her happy and stable would be a blessing.

Isn’t God good?   Each and every time when I feel like things just can’t go on,  God proves again that this Ava story is NOT done and He still has a plan for her.   Our job is to keep trusting and holding on through the ups and downs, and just wait and see what God is going to do.

Thank-you once again for all your prayers and support.   God knows that without it, we just couldn’t do this journey.

Oh my little turkey Ava, I love to see that smile!!!