My theory

These past few days have been crazy again!   And it was good to be home for a bit, but I won’t lie, being home is also stressful.  Stressful in the way that when I’m there I just want to stay, but then I’m torn because I miss Ava.    And Erik was started to say how he just wanted to stay home and was starting to say it a lot, and so yesterday Jason and I decided since home is just not our reality right now, it would be just best to head back to Toronto.    We did leave rather late last night, but usually when you leave late at night there isn’t any traffic so it works in your favour.  But not last night!  We hit construction around 11:30 pm on the 401, so had to take a detour, just to hit downtown Toronto at 12:30 am.   And it seriously could have been 12:30 pm, it was that busy.  We weren’t sure if a show or a game had just gotten out before we arrived, but there were people and cars everywhere which definitely slowed us down.  We finally got back to the Ronald MacDonald House around 1:00 am… fun.

This morning I was so tired I called the hospital at 8:00 am to say that I would be shortly and to check on Ava, and was reassured that Ava was fine.   But then around 9:30 am I received a phone call from Ava’s nurse to say that Ava’s heart rate was up, and with that her temp was coming up and she spiked a fever of 39 degrees and I should come in.   Oh Ava.

And to make matters worse, when I got to the hospital,  I found that they decided that Ava needed to be watched more, so they moved her out of her private room and into a true “step-down” room where there are 4 children and two nurses who never leave the room.    This was upsetting because if we aren’t in our own room our kids can’t come and visit Ava, and if Ava can’t wait for a heart, this might be all the time we have with her, and it would be very hard if we couldn’t all be together.

I called Jason and asked him and the kids to pray for Ava, and to pray that we would get moved back to our own room…  and not 10 minutes later we got the news that they did decide that it would be best for us to be back in our room, praise God!    We were going to have to wait since they had moved someone else into there,  but they would be out later in the day and then we could move back.    It was so cool that God answered the kids prayers and they were pretty pumped about it.  William thought it would be cool if everything he prayed for got a ‘yes’ answer so quickly…  which made me really glad that God has a sovereign will. 🙂

So the end the day saw Ava back in her own room.  The poor girl slept most of the day today, she clearly wasn’t feeling that good, and because of the fever they took more blood cultures from her… this probably makes 100 blood tests in the past weeks.  They just can’t find any infection.   We did have that one positive culture the other day, but it may have been a one-off because nothing else has ever been found.   She seems to be showing signs of infection, but I’m starting to have my own theory.  I’m wondering if Ava is in some kind of pain, which causes her heart-rate to go up, and because of her heart-failure, the increased heart rate actually causes her temperature to rise.  This would be opposite to the premise that usually applies, that an increased heart-rate is caused by a fever.

Who knows, I’m certainly no doctor, but when I called tonight at 9:00 pm to see how Ava was, her heart rate was back up into the 170’s, so I asked the nurse to give her some morphine.  I called an hour later and her heart rate was back down to 140.  So maybe Ava is in pain.    I would like to try to keep her pain free for a day or two to see if we can keep her heart rate down, and just maybe, that will keep the fevers at bay.

If I’m wrong, I would just pray that some source of infection would be found in our poor little Birdy.  She’s been poked so many times that she’s not going to have any blood left and like I said before they just can’t find any infection that would explain her fevers.

But whatever happens, I’m so grateful that our family is back together, and so thankfully that God answers prayers!

A verse for Ava…

Our little Ava is a very sick girl right now in critical care.  Yesterday afternoon her temp started to come up and her heart started beating faster and it was still high at 10:00 last night so I came back to the hospital to stay with her.   Around 4:00 am she still had the high heart rate and wasn’t settling so the team from the critical care unit came up to assess her and eventual brought her down to their unit.

She spiked a fever of 41 degrees after we got here so she clearly is fighting some sort of infection or virus.  And that combined with a very poor functioning heart is not a good combination.

Right now she is laying on a cooling mat to bring her temperature down and she is sedated and on pain killers.  Her heart rate does seem to be dropping and she is comfortable, but now we have to wait and see what God’s plans for Ava are.

Our beloved pastor Norm and his wife Cindy came to see us yesterday along with friends Dawn and Cory.  Dawn gave me this verse for Ava which I love and is so perfect.

Psalm 73:26

 My flesh and my heart may fail,

    but God is the strength of my heart and my portion forever.

 

Once again, no matter what happens, God is our strength, forever!

Delay and Sick Days

So I heard from Toronto yesterday and they are almost 100% sure that Ava’s catheterization scheduled for next week has been postponed due to her cough.  Boo hoo.   So even though it’s not officially cancelled yet, it stands to reason they don’t want her sick and coughing if they need to check the pressures in her lungs.  And I certainly don’t want to have to do this test twice.

The news is a huge bummer, but I’m glad they had warned me last week when we were in emerg that it might happen.   So we keep waiting!  It looks like we will still be going to Toronto next week for Ava’s sedated echo which was scheduled as part of her pre-cath work-over.   Please pray for that because last time she had a sedated echo, she went all gray and limp when she was coming out of sedation – and we don’t want that to happen again.  Actually,  I’m starting to think of the catheterization itself with a little bit of hesitation.   It is a 2-3 hour procedure done under general anesthetic and there is always risk with that.   I hadn’t really thought too much about it before, but now that it’s been delayed  I’m going to have lots of time to think.   And it’s a shame, it would have been nice to have it done and over with before I realized I should be worrying. 🙂

And then to top it all off,   Sarah came down with a fever tonight – and that’s not good for her sake or Ava’s.   She is constantly playing with Ava and holding her, and we can’t afford for Ava to get sick again.   And for herself , when diabetics get sick their blood glucose levels go all wonky.   So tonight we need to check Sarah’s blood sugars every four hours to make sure she’s OK.     Illness apparently makes your demand for insulin go up – so that can affect a diabetic by making their blood glucose levels get too high and they can develope diabetic ketoacidosis (DKA) – which is very very very bad.    And here in London we don’t have access to a Diabetes doctor 24/7  like we did when we were in Toronto, but at least here we have 24/7 access to our friend Dave… at least that’s what he says.  Thanks for your help tonight Dave!

So we keep trudging along here,  through the delays, and through the Sick Days.  Please keep us in your prayers!

Most People…

Most people enjoy their good health.  Most people would prefer to stay healthy and NOT get sick.  Most people would prefer to stay healthy and not get sick so they can go about their normal routine.  Most people just empathize with other’s who are sick and do not try to have them make you sick as well.  Most people do not take their temperature every 5 minutes just hoping that it will confirm what they already believed to be true – that they really are sick.    And most people when the thermometer FINALLY agrees with them and shows that their temperature may be rising even ever so slightly do not leap around and jump for joy and plan how great their day will be NOT at school, but rather spent lying reading on the couch.

Well that was Erik this morning, but we all know he’s not like most people.   William truly has been sick since the start of the week with a fever and headache that has morphed into a bad cough, and he legitimately got to miss school because of it  – and that was just killing Erik.  It’s funny because William loves school and would rather go, and Erik would do anything to stay at home and here they both were on the wrong sides of the fence.    Since Monday when it was clear William was staying home, Erik has been  trying to convince me that he was sick as well  – except he’s been showing no symptoms whatsoever.  But he got his wish this morning when just before we walked out the door  for the bus it really looked like it was happening as his temperature did rise according to the thermometer and his forehead did seem a bit warm and I hate sending kids to school with fevers.   But by noon I was very skeptical and took his temp again and he was perfectly normal.   I’m wondering if I need to replace my thermometer.   But I was a nice mom,  I called it a mental health day for him and let him stay home for the afternoon as well.

And as it turns out he’s a pretty handy guy to have around, especially when you are sorting out junk drawers and finding all sorts of things.  Because you can show Erik any gadget, any wire, any piece of plastic and he knows exactly what it is or where it came from, and if he doesn’t know – then you can be fairly confident that it’s garbage.    So with his help I got a lot of stuff sorted out today.   And when I found all of our mini-video cassettes from our video camera  and wanted to know how to get the video off the camera and to the computer – he knew what a fire wire was and even found one for me (which I found surprising) and although we never got it working, he spent the rest of the afternoon on techie websites trying to trouble-shoot some problem we were having with the camera.  This kid puts me to shame… I used to do techie things, but at 8 he’s already left me in the shade.

So most people wouldn’t get their little brother to lick them to try to make them sick, just so they could stay home for day, but I’m here to say that I really am glad that Erik isn’t like most people. 🙂