Where my heart is today…

Today my heart is with the Syme family as they mourn the loss of their sweet daughter Evynn…

Evynn

A four year survivor of hypo-plastic left heart,  and a receiver of a heart transplant that so sadly didn’t end up saving her life.

Their blog:  A journey to a Whole Heart

Please join with me today as I pray for this family.

Once again…

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

 

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A trip to Toronto

It’s Friday already!  And I really thought that I would post this post sooner… but apparently that didn’t happen.   So it was already 5 days ago when I took a train to Toronto to visit my good friend Tanya who I left behind in Toronto when we came home in August.   I’ve written about Tanya before and I’m so blessed to call her a friend.  We grew quite close as we walked the same path of being mom’s to our girls waiting for heart transplants and she was (and is) an inspiration to me and a huge source of knowledge.   She also makes me laugh alot… which is good, laughter is always good.

Anyhow, I hadn’t seen Tanya, or her daughter Aleeda who received her new heart August 2nd, or Tanya’s three-month old baby daughter Britton in almost 2 months –  so thankfully Jason encouraged me to go.   And I’m glad I did as it was wonderful to see them again.   Aleeda looked amazing and it was so nice to be able to hold her and cuddle her and see her happy, and she grew!  Since she has received her new heart she has grown so much and filled out, and her hair is longer and she looks like a new kid.   And I was also so pleased that she remembered me and wasn’t mad that I hadn’t visited her in so long.   And baby Britton is getting big and is so sweet!   She was my therapy baby when she was a born – holding baby’s for me is the best therapy I could ever get – and I even got to babysit her briefly while I was visiting this time.   I felt like a nice sort of aunt.

Here are the girls in their stroller, the sweetie-pies. I love how Britton is on the bottom shelf…

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Now even though Aleeda looks amazing, she is still in  hospital, which is rather frustrating.  Especially considering the fact that she has been in hospital since July 2012.  Can you just imagine?  Tanya has not lived at home with her husband in 15 months and it will still be a while before she gets all the way home.  Hopefully soon Alleeda will soon be released to live at the Ronald MacDonald House, but until her feeding issues get sorted out, she is stuck in hospital.  On Tuesday morning Aleeda did get a g-tube, so that ng tube you see on her face is no more – which is always nice to see.  But please please pray that God would intervene here and heal Aleeda’s tummy so she can go home.   My dream is that their family will be reunited and home by Christmas,  please pray with me!

I came home on Tuesday and I made it back just in the nick of time to watch William run in the cross-country finals.  And I when I mean just in time, I mean that I had to run and bum a ride of a stranger (another mom whose child was running) to make it there 2 minutes before the race started – but I saw him start and finish – and William came in 6th!   Out of all the grade 3 boys in the city,  running  a kilometer and half.   We are so proud.

And then Wednesday was back to real life for me, but I felt really unsettled and a bit down.  It didn’t seem that terribly hard to go back to Sick Kids when I was there, but coming home again made me realize once again just how much I missed Ava.    But it was more than that…  it was seeing families who we knew while we were there with Ava, and who are still there,  as well as meeting new families who have sick little one’s and even seeing Leo’s family as they waiting for him to come out of surgery.     It made my heart ache for these families who have to go through so much.    I can’t tell you how much strength we got from our faith in God as we walked through our journey with Ava.  It covered us with peace and joy even in the darkest times, and now I’m committed to pray for the families that I’ve met who are still walking through it.

But I know that losing Ava has changed me forever, and has even changed my view of the world.   I know now that I have no control over life, I know that bad things do happen and things aren’t always going to turn out as I want.  But am I worried, or discouraged or even depressed?   No I’m not. 🙂     Because I have a personal relationship with the one who has control over everything, the same guy that allows these seemingly bad things into my life for a reason and when I get to heaven He is going to show me how these things all turned out for His glory.   Praise God,  He holds it all in His hands.

I love this verse… here it is again…

2 Corinthians 4:16-18

16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Amen.

Fun with food

Today was thankfully a pretty good day for Ava.     I went to the hospital early this morning – around 7:30 am –  because Ava is typically awake at that time and then is usually ready to nap again by the time I get to the hospital around 8:30 am.   But due to Murphy’s Law, because I went early today,  Ava was still sleeping.    OF course.   But she woke up soon after and we cuddled and I took her for a walk.  Then she slept again.

And when she woke up again later in the morning she seemed happy and rested so we decided to have some fun with food     Now it’s sad that Ava is 8 months old, but really doesn’t eat orally.  She still gets all her food pumped in her through her ng (nasal gastric) tube.    Through the ng tube she gets fed my breast milk that has been fortified with formula so that the milk has more calories.   This is because fluid is NOT Ava’s friend,  so they have to make every drop of milk they give her count.    And then to make it easier on Ava’s tummy,   she gets fed continually, only 27 mls an hour, 20 hours a day.  Not that much huh?   I think it’s barely enough and the dietician talked to me today about concentrating Ava’s milk even further, so they will try to do that next week and hopefully Ava will tolerate it so she can get the calories that she needs.

Anyway, so we had fun with food today.  Real food, because the problem is not that Ava can’t eat, it’s that she lacks the energy to eat.   And now that she’s been tube fed for so long, the urge to eat just doesn’t come naturally to her.   So we try our best to get her to eat whenever she is awake and feeling good.  Today Lisa our Occupational Therapist came by and we put some banana in a mesh feeder for Ava so she could gum the mesh and get the banana flavour,   She didn’t mind it and it’s good for her to taste things and smell things and experience different textures.   And she also drank some milk from her sippy cup.    Lisa even brought some puffs for Ava to try, but Ava wasn’t too happy about them and certainly didn’t eat them.    But even then, they are still good practice for Ava’s fine motor skills and at least it was a new thing to touch.

But even our little fun with food session didn’t last too long as Ava got tired.  But then the OT brought her a crib toy that you could touch and push buttons and it played music and lite up and Ava loved it!  And then I felt bad that I hadn’t thought of finding a toy like that for Ava before… but it’s so different having a hospitalized child.   When i had my healthy kids at home I didn’t have to work at stimulating them, it just seemed to naturally happen.   But because every day is the same for Ava, I forget that even though she doesn’t seem to be growing older she is and I have to get more creative to find ways to stimulate her.

But then after all that Ava slept most of the afternoon away.    It’s too bad because the more she sleeps, the more she misses in terms of developement, but it can’t be helped right now.  Today the OT was encouraged that Ava is developing slowly in ways that she can, like speech and find motor control, but even then is NO way near where she should be for an 8 month old.  But Lord willing if she gets a new heart we will just work hard to catch up.

We did have a little scare today as there is blood showing up in Ava’s diapers.  It’s fresh blood so it could just be a fissure and she did get an x-ray and thankfully it didn’t show anything concerning.    But now she is going to get her blood-thinner levels checked tomorrow because they did just go up on her blood thinner this week and if the dose is a bit too high then it could be causing the problem.  So please pray that it’s a situation that is easily resolved that it doesn’t turn into a bigger issue.

I will leave you with a pic I took of Ava earlier in the week…  our sweet little Birdy… who you can see is still a little puffy from all the fluid she is retaining.

Ava pretty

Just patiently waiting and praying for a new heart!

Quick jot…

Today was an OK day for Ava.  I got to the hospital early this morning because I didn’t want to miss any of her awake time, and I was rewarded by a happy smily girl, who gave me a nice snuggle.   I took her for a walk around the unit, but she tried quickly and wanted to go to sleep right away.   It turns out that her liver is a bit enlarged again which means that yet again she is getting fluid over-loaded.  I thought that it might be that way yesterday as she just didn’t have the energy that she did have the previous week and her heart-rate has been higher than normal.   So this morning they decided that she needed another dose of metolazone – the heavy-duty diuretic they give her once in a while.  It takes a while to work, but I’m hopeful that by tomorrow morning she will be feeling a little better.   She is such a little trooper and even though she still wants to sleep most of time, I just cherish the awake time we get with her.

And Aleeda is doing well… she is still sedated in the Critical Care Unit, and they are still waiting for her ‘new’ heart to regain all its function.   Apparently it’s not usual for a transplanted heart to lose some function after transplant, but we are just praying that the heart recovers all of it’s function soon.   Alleeda also still has an open sternum, so please pray that they can get her chest closed sooner than later, and that she and her new heart can heal quickly together.

And I apologize but it’s been a very busy day and I’m fading fast and so I need to sign off.  But tomorrow is another day and as always I will keep you posted!

His perfect timing

I have some great news for everyone, but I will keep you waiting and first tell you that little miss Ava had another great day.   Our plan was to go to church today, so when I accidentally woke up early this morning I to put it to good use by getting the kids ready and dressed to help Jason out,  and then I left the rest of the getting ready to him and went to visit Ava.    And Ava was so happy to see me!  I got some cuddles and lots of smiles from her and we both really enjoyed our quick visit.   Then Jason and the kids picked me up from the hospital and we went to church at Harvest Toronto West .   And there we heard a great sermon about how God always has a plan, God’s plans are always for His glory, God’s plans are always for our good and that we must believe that God’s timing is always perfect.    Can you believe that was the sermon?  Seriously it was, I kid you not.   Little did the pastor know that he was delivering a sermon tailor-made for us.  And even though these aren’t new concepts, I think it was perfect time for a reminder of these truths.

But in terms of God’s timing being perfect, I am so excited to tell you that our little friend Aleeda from the hospital got her new heart Friday!!!!    She did!!!  It’s so incredible,  because after waiting one full year, she finally received a heart transplant and the wait is finally over.   I am rejoicing with her family and I am so thankful that God has answered all the prayers that had gone up on Aleeda’s behalf.  God is good.

Now, just because Aleeda has received a new heart doesn’t mean that everything automatically is well with her… she is still in critical condition and her chest isn’t closed yet, so please please be in prayer for her as her body adjusts to this new heart.   Just think, all of her organs and brain and even her blood vessels need to become accustomed to a good steady blood flow, something that she hasn’t had in a really long time.  But she is a fighter this little one, and I know that God is going to carry her through this.

It’s certainly my prayer that God will carry her through as Aleeda has definitely found a place in my heart.   She had a room right across from Ava’s, and even today I missed seeing her cute little face smiling at me from her high-chair in the hallway.   She used to lure me over to her by making her kissing face,  even though most of the time when I went over to her she just allowed me to kiss her.  She loves Ava and always smiled when she saw her and her mom has become a wonderful friend to me.   I have been so inspired by how patiently Aleeda’s mom Tanya waited for this heart, the staff at the hospital loved her and so they should, as Tanya never grumbled or complained.    Tanya also has a strong faith in God and we both knew that He had a plan, and it’s so amazing to see God’s plan and timing finally come together.

And it’s another reminder that God can bring a heart!   And so we ourselves just keep giving Ava to God, knowing that she is His child first and foremost and even though this waiting for a new heart – or perhaps God’s plan to ultimately heal Ava in heaven – isn’t an easy road to travel,  we can trust God and wait for His perfect timing.

Amen.

He will never fail….

Well it’s pretty amazing, but Ava has been feeling a lot better the past two days.   And she has been losing some weight – which is fabulous as she has some water-weight to lose, and her liver is smaller than it has been in weeks.   And that of course is a good sign because it means that she isn’t so congested with fluid.      But she was being a turkey yesterday, because she seemed to be the happiest when I wasn’t there.   Three times yesterday she was happy and smiling at the nurses when I wasn’t with her… and I’m with her most of the time.  Apparently I need to get to the hospital around 7:00 am, not go for lunch at all, and stay till after 8:00 pm…  oh dear. 🙂

But thankfully today I did get some smiles out of her, and it just makes my heart so happy to see her happy.   She still doesn’t look as good as she did a month ago, but she’s still here and she still can smile and we’ll take it with thankful hearts.   And I’ve been able to cuddle her again!    When Ava doesn’t feel good she doesn’t like to be held,  she just arches her back when I pick her up and wants to be put down again, and so for the past while I’ve been starved for snuggle time.     But last night since she was feeling better, I took her out of her bouncy chair as she was falling asleep, and she snuggled down in my arms and it was just so wonderful to be able to hold her again.    This afternoon when I took her for a walk around the unit (her huge IV pole in tow) she actually cuddled right into my shoulder and she hasn’t done that in ages and it’s a sure sign that she is feeling a little better.   Isn’t God good?

And so we are truly grateful.    And I’m glad to have something to be thankful for,  because lately I just can’t help but think about how much our family is missing out with our baby in the hospital.   Sure the kids are having fun doing things they normally wouldn’t have a chance to do, but we aren’t home, and I long to be home.   We would have had so much fun this summer with a healthy 7 month old,  Ava would have loved the pool and the kids would have had so much fun playing with her… and I feel like Ava’s babyhood is slipping away.   And not only that, but because she is so weak, even though she is almost 8 months old, developmentally Ava is probably on par with a 3 month old in terms of physically ability.   If a new heart comes we will have a lot of work to do catching up, but I guess that’s the least of our worries right now.

But I have to stop myself from feeling too bad for us, because I’m learning, self-pity doesn’t get you very far.    And when I start looking down,  I tend to forget to look up, and I need to keep looking up and keeping putting my faith and trust in God.  He does know what He is doing and He has a plan.  In fact,  a friend sent me a text the other day and I’m going to share it with you… I get teary every time I read it…

Do not despair
God is always good
I will see the goodness of the Lord in the land of the living
I know that you have a future and hope for me, 
and I know that you work all things for good to those who love you.
I will NOT despair God, you are always good.
Psalm 27:13-14  
I believe that I shall look upon the goodness of the Lord
    in the land of the living!
 Wait for the Lord;
    be strong, and let your heart take courage;
    wait for the Lord!

(thanks Isabel!)

So instead of feeling sorry for myself and my family (which is so tempting!!!!!)  I think I will choose instead to be thankful and to trust a great God.    And there are lots of things to be thankful for… for friends and family who are doing such an amazing job supporting us through prayers, words and physical means.   For a place to stay, for a great hospital… for being able to be together as family and an amazing God who will never ever fail us.

Please pray that I would continue to choose to look up… lately it’s become more of a battle,  maybe because I’ve been alone now for a few days and without Jay and the kids here I’m more prone to feel sad.    That and I feel like journey is starting to wear me out!!    But even when my heart is weak, my mind knows that strength comes from the Lord and if I keep choosing to trust, He will never fail.    He will never fail.

Amen.

And they’re off…

So today.   Well, this morning when I called the hospital first thing they told me that Ava  was currently sleeping but had woken up previously and had been very irritable and hard to settle.   Because of this they decided to start her on a morphine infusion, to see if a constant steady supply of morphine would better manage her pain, if pain is indeed her problem.    I thought I had better head to the hospital, so after Jason did a quick Sunday devotional with the kids I left to go see Ava.

And Ava seemed settled when I got there, so that was good.  But I hadn’t been there long when I got a call from Jason telling me that a child at the Ronald MacDonald House had come down with chicken-pox.   Now this might not seem like a big deal, but when you living in a big house full of immune suppressed kids, it’s not a good thing.  So in order to control it, the RMH has  cancelled every gathering for at least 5 days…. meaning no summer program for the kids this week, no craft room and no ‘Home for Dinners’.   Oh man!   It was certainly a depressing thought for Jay as it meant he was faced with keeping the kids occupied this week without any help from the RMH, and probably not much help from me seeing Ava hasn’t been feeling well.

Something had to be done, so after a quick phone call, we packed up Jason and the kids and they left after lunch today to join family at a cottage up north for a few days.  It was perfect timing and I’m so glad that Jason and the kids will actually have a fun couple of days, rather than stay here and be bored.

So now there are gone and it’s just me and Ava again for a few days.   The up side to this is that it means that I am able to spend as much time at the hospital as I need too without feeling torn, and I can enjoy a few quiet evenings by myself without feeling guilty. 🙂

And I was glad I was able to stay late at the hospital tonight, because Ava woke up around 6:00 pm and was happy to be off her CPAP and sat in my lap and looked around for quite a while.  I thought she was tired out soon after and tried to put her back to bed but she didn’t want to settle, so our really kind nurse suggested taking Ava for a walk, and Ava loved it!   Now, I think I mentioned that they put Ava on another infusion of a anti-anxiety med the other day, Midazolam, but after looking it up tonight I’m going to request we stop it, because when Ava is awake she seems a little stoned and I don’t like it.   Plus, I think she is just as irritable on it as she was off of it, if not more.     Anyway, after Ava’s walk she was finally happy to go to sleep which I was happy to see.    So it seems that she was feeling better tonight, but the real test will be tomorrow when her big diuretic will have worn off and she just might retain more fluid again. I hope not!

It must be everyone’s prayers, but I feel at peace tonight… even with my family away and my baby not doing that great.    Isn’t God good?   It’s a new week and we’ll just wait and see what God will do.   Again, we appreciate and covet your prayers!

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.

Things don’t just happen…

It has been so crazy around here… crazy and busy and I’ve been so tired, so I apologize for not blogging.

Kinda crazy too because Ava hasn’t been doing that well.  Too be honest when I saw her yesterday afternoon I was pretty sure that we were losing the fight.   Ava’s heart-rate was up and she had a fever and was restless, and nothing seemed to be working to calm her down.   They had tried morphine and a sedative and Advil and Tylenol and she was still restless and irritable.    Her feet and hands were dusky and she is still so puffy, I know she is still extremely fluid over-loaded.   So yesterday afternoon was really hard, and very very emotional.

So when the PACT team came by, we discussed how to keep Ava more comfortable and they thought that maybe pain wasn’t Ava’s problem, but maybe she was feeling anxious, with breathing being so difficult and with her heart not working well.  So we decided to swap out morphine for some anti-anxiety meds.  We gave her a dose right away and it seemed to help and that was great.  She woke up a little later and even though was calm, you could tell that she was a little befuddled… the cocktail of drugs that she was on was a bit much I think.  And then I just start feeling bad for her.   She hasn’t really smiled in days and I know she’s not comfortable, but waiting for a heart is like having a carrot dangling in front of you…  you don’t want to give up the fight in case the heart is right around the corner.     But once again I was praying that if God was calling her home, that she would just go, that we wouldn’t have to take drastic measures like turning off her heart meds or take away her CPAP.    Jason and I both don’t feel right about doing that,  and really, I know that neither of those things can really keep her alive if it is her time to go, so I take comfort in that.

And then just before I left the hospital yesterday, when I was feeling so low…. the Cardiologist Fellow came in.     He is from Singapore and he is wonderful and kind and really knows his stuff, and he’s a believer to boot!!     He said that he thinks that Ava needs to lose about 400 grams of fluid and once he can get her back to real or ‘dry’ weight, she will feel so much better.  And then once again I feel kinda astounded by God.    Here all afternoon I feel like I need to prepare myself to let Ava go and the writing seems to be on the wall, and then a doctor comes in and says that he believes there is still hope, and what he is saying makes sense.   And then I realize that when I try to guess at what God is going to do I never seem to get it right.  I just need to have faith and wait.

And Ava had a good night last night, but this morning at 6:00 am she was awake and really restless and irritable, like she never really has been before.   Again they gave her every drug they could to relax her and finally she slept again.    And then later this morning when she woke up I gave her a little bit of milk to drink, like I always do, but when I was done she freaked out.  So I gave her a little more and she drank it like she had never seen fluid before.  It kinda dawned on me that maybe she was just incredibly thirsty.    Which would make sense… she has a set amount of fluid she is allowed to take in during a day, so when she started IV antibiotics last week, they took away fluid from her feeds so it wouldn’t be too much.  But  IV fluids tend to collect in wrong places, and that is probably how she got fluid over-loaded.   So now they are trying to dry her out, so they haven’t given her all her fluid back to her and so she probably is thirsty poor baby – thirsty like every other cardiac kid on the ward. 🙂       But hopefully in a couple of days she will have lost this extra fluid and we can increase her feeds and she will feel better.  That is the hope, we will see what happens.

I know I don’t have to ask you to continue to pray, I know everyone is praying.  God has been so good and so faithful, and I know that He is carrying our little Birdy under His wing and I know He cares for her so much.    And my friend Christa posted this poem in my comments, but in case you didn’t get to read it, I thought I’d put it here… it’s so perfect.

Things don’t just happen to us who love God
They’re planned by His own dear hand,
Then moulded and shaped and timed by His clock;
Things don’t just happen, they’re planned.

We who love Jesus are walking by faith,
Not seeing one step that’s ahead,
Not doubting one moment what our lot might be,
But looking to Jesus instead.

We praise our dear Saviour for loving us so,
For planning each care of our life,
Then giving us faith to trust Him for all–
The blessings, as well as the strife.

Things don’t just happen to one of His own,
To one that has taken His stand;
No matter the lot, the course, or the price,
Things don’t just happen, they’re planned.
(by Esther L Fields)

Amen.

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!