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. 🙂

Home again

So we got released yesterday and brought Ava home from the hospital, hurrah!   It’s so good to be home, although Ava definitely isn’t 100%.   Her nose is still stuffy and it’s only today that she has started to smile again and look some-what happy.    Last night she was tired and lethargic which had me a little worried, so to reassure myself I paged the cardiologist on-call in London to just check to see if Ava’s behaviour was normal.  Thankfully the Cardiologist on call was the one who had seen Ava that morning and she felt that if Ava’s vital signs were good then I shouldn’t worry as it made sense for Ava to be feeling tired as she is still tying to kick this bug.

But praise God – that He kept Ava and held her and that she wasn’t worse than she was.  I had a moment of panic when I brought her in to emerg in London Tuesday night – because while she was being triaged – the nurse asked me to come with her somewhere more private – and she brought us into the trauma room.   The room then suddenly filled with people and dr’s and they started her on oxygen and inserted an IV and I was a little surprised, and then worried because I knew that she wasn’t right – but obviously didn’t see how bad she really was.   I guess the fact that her little half of heart was beating almost 200 beats a minute clued them in that something was very wrong.

I’m so thankful once again that we live close to a good hospital filled with competent people.  And everyone in the emerg at London takes Ava very seriously and I’m glad.   And again,  influenza could have taken Ava’s life,  but God spared her and I am so thankful for everyone’s prayers, so thankful that she is on the mend and is back at home with her family.

But now in the aftermath of getting a positive influenza diagnosis,   Ava’s catheterization is once again postponed and it looks like it won’t happen until the end of May.   Just to recap – the catheterization is a procedure where they will insert a thin catheter into one of Ava’s veins, go into her heart and test the pressures of her heart and lungs to see if she is ready for her next surgery – the Glenn.   And Ava desperately needs her Glenn surgery so that her heart won’t have to work so hard.    If everything goes right, after the surgery she won’t be as medically fragile and hopefully won’t require as much care… but that part is neither here nor there.  She is our child and we will give her whatever care she needs for however long.

And I was blessed to come home to a tidy house with ALL my laundry done thanks to my wonderful mother-in-law who took care of Sophia and lended a hand.   We couldn’t manage it alone with everything that we are going through and we are blessed with all our friends and family who keep helping us.    I keep saying that it’s like we are trying to juggle it all, but no matter how hard we try, we keep dropping balls…   but that’s our life right now.   God is certainly giving us a lot to handle, and as Jason always says, it’s amazing what you actually can handle. 🙂

So we are go grateful to be home and together again on such a beautiful day… Praise God!

So Ava has…

Ava’s nasal swab came back and she has influenza.   Influenza, at the end of April, so annoying!    But it makes sense, because Sarah had classic influenza symptoms last week with her three days of fever and runny nose and cough.     So one week it plays havoc with Sarah’s sugars and the next week lands Ava in hospital.  I am not a friend of influenza.

They are starting Ava on Tamiflu tonight – the anti-viral medication – and the dr said today that they won’t be sending us home tomorrow so it looks like we will be here until Friday –  hopefully not longer.

It does mean that we will have to reschedule Ava’s GI appointment that she had at Sick Kids this Friday.  It was her first appointment to start the process on hopefully getting Ava a Gastrostomy tube (G-tube) to replace her current nasal gastic feeding tube.    But I guess it will have to wait.

We will also have to see if we can keep Ava’s new catheterization date of May 13 , I will keep you posted.

So please keep praying for our sick little Birdy and our family as we are split up for a few days.   Thankfully by God’s grace we’ll get through this little bump in the road just fine and we are just really happy to know what Ava has so can deal with it and keep moving on.