Another bump in the road

Well three days ago I took that video of Ava and she was quite happy – and then yesterday the little monkey went downhill again.   When I went to see her yesterday morning her heart rate and respiratory rate were up and her oxygen saturation levels were down.  They were worried she was getting sick, and then when they went to access her picc line for blood work – the picc was sluggish and they couldn’t draw blood back in the line.   That made me and the Cardiology Fellow  wonder if perhaps Ava hadn’t properly been getting  all of her heart medication that she gets through her picc.   She is so dependant on her milrinone that if she didn’t get enough of it over-night,  she would definitely be showing worse signs of heart failure, even if she was or wasn’t getting an infection.

But irregardless, her temp was also up, so they had to do blood work once again to see if they could find pinpoint any source of infection.   Later in the day it came up that there were some markers for infection in her blood – her white blood cell count was up and her nutrafils were up as well – but we have to wait 48 hours for blood culture results to come back.    Just to cover all her bases, the Dr put Ava on two strong anti-biotics in case there was something, because we all know that Ava has no resources to fight an infection on her own.  Towards the end of the day last night she also started de-satting again so we had to add oxygen to her CPAP, something we’ve never had to do before, so that wasn’t a good sign, but she was sleeping quite comfortably so I felt Ok to leave her for the night.

Then early this morning I got a call from Ava’s Doctor telling me that Ava didn” look great and that I should come to the hospital.   And when I got there, Ava did look quite ill, but at least opened her eyes for me and they were relieved because she had seemed so out of it before.   But she just didn’t look like herself, and the fact that she was also fluid over-loaded didn’t help.   But as the day went on she did get a bit better.  The nurses gave her some medication to help her sleep and some morphine so she would be comfortable and she slept most of the day.   Towards the end of today I actually got a smile out of her which was wonderful.   And we were able to turn down her oxygen a bit and so praise God she does seem to be on the mend, but I guess with Ava you never can really tell.

Oh my Ava!  These episodes of hers are certainly stressful and seem to take years off of my life.  But even though I cry and wonder each time if I’m losing my baby,  I also feel an over-whelming sence of peace, that no matter what happens either way, it will be OK – God will give Jason and I His grace and strength to get through it.

But where there is life there is hope!    And even though we are experiencing another bump in the road,  Ava’s journey is not over yet, God may still bring this baby a new heart!!

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A Verse and a Video

Ava had an OK day today, I think her teeth were bugging her and that made her a little cranky, and that tired her out so she slept most of the day.   But just before dinner she woke up and was happy and smiling for me.  And then tonight Jason and Will went up to see her and got more smiles again.    We are so grateful that even though CPAP is her life now, she can still give and receive love and bring us joy.

I just wanted to share a verse that I’ve been clinging to lately that another cardiac mom emailed me….

John 9:1-3 (ESV)

Jesus Heals a Man Born Blind

 As he passed by, he saw a man blind from birth.
 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

It reminds me again that God has a purpose for Ava and He planned for her to be exactly how she is.  I pray that her story would be one that does glorify God and we truly pray that the works of God may be displayed in her…  and wouldn’t it be amazing the work He displayed was bringing her a new heart?   Oh God, please bring Ava a new heart!

And just in case you have a minute, I took a little video clip of Ava last night.  It’s nothing super or fantastic,  it was just Ava happy and playing with me talking to her.  She looks pretty good, but because she’s not on CPAP she is working harder to breathe and she was only able to play for a few minute before she was all tired out.

Oh – and I guess I’m so used to Ava I don’t see all her extra hardware… but I wanted to assure you that nothing on her, the chest leads or the ng tube going in her nose, or the picc line in her arm hurt her,  now they just feel like part of her and she is very used to them. 🙂

Enjoy!

the Zoo

Today we went to the Toronto Zoo!     Through Sick Kids Child Life Program,  the Zoo graciously had us as their guests (free of charge) and we went and enjoyed a day with the kids and the animals.  It was good and we had a great time and it was nice to get away and spend some time as a family.

And we saw the Pandas!   Well, actually we saw one of the Pandas that are currently on loan to the Zoo from China.   The other one was sleeping inside and we didn’t want to line up to see him or her, I can’t remember which Panda this was… but it was pretty cute!

Panda

I think our favouite was the Polar bears though… it was cool seeing them swim underwater and eat their vegetables…

Polarbears

Now I’ll be honest, going to the zoo wasn’t exactly all roses and peaches and cream.  Jason and I have been realizing that our regular lives include more than the average amount of stress (really?) and so when we add extra stress (like taking four kids to a Zoo)  I feel like I don’t have much reserve to deal with stressful situations… like when we lost Will today.  Well technically Will lost us, he kept walking after we saw the penguins and thought we were behind him, except when he looked behind we weren’t there.    Thankfully the other kids and I stayed put and Jason went after him and found a rather upset Will fairly quickly, praise God, but I felt the panic rising up in me much quicker than it would have before.

So it was really nice that when we found ourselves all getting tired and cranky and hot,  we could go cool off at the splash pad.  The kids loved it and had a great time.

Will

Soph

Sarah

Erik

We were definitly blessed to be able to get away today and make some memories!!!

And then I had time before dinner to go to the hospital and see our own little elephant…. sweet little Ava on her CPAP…

Ava Cpap2

Ava Cpap

The camera flash startled her here…  sweet little miss.   It’s a little hard that Ava needs to be on CPAP so much, they have pretty much said she needs to be on it at all times, except for a few quick breaks here and there.    But thankfully for most of that time is she asleep, and when she is awake it doesn’t bother her too much and I can still hold her interact with her with it on.

When I did take the CPAP mask off her tonight, she was so smiley and happy…

Ava

But she just can’t be off it for long.     Tonight she only lasted about 30 minutes off before it was obvious that she was working too hard.   But last night in the short time she was off, I was able to feed her pears and she was drinking milk from her sippy cup!     We just have to enjoy the good times we do have with her now,  even though it is hard not to mourn the time that we are missing out on.    But we will take whatever good God gives.

So all in all,  it was a good day, making the most of the situation we are in.

Thanks again for your prayers and your encouragement… we appreciate it so much!

Encouraged

Well this morning started out well as I was happy to be back at the hospital with Ava and she was happy to see me and we had a really nice snuggle…

But then rounds came by.  And the doctors told me that in their view Ava is getting worse and they are pretty sure her terrible heart function is causing all of her problems.   And because of this they wanted to make sure that I talked again to the PACT team (palliative team) about making sure we had a Care Plan in place for Ava that would make sure that she was always comfortable and never in pain as she struggles to wait for a heart.

Now,  the funny thing is, I actually talk with the PACT team daily as they come and see how we are doing, so we are all good friends by now.    They know us and how we feel about Ava and her wait for a heart,  and they know we have never allowed Ava to be in pain or uncomfortable.   But they said that sometimes the Dr’s – in our case Cardiologists –  feel that something has to change in a situation like ours when a patient is deteriorating rapidly, when really nothing medically changes, we just continue on like we have been.   But to make everyone happy, the PACT team said they were going to write a little note for Ava’s binder saying that Jason and I are good advocates for Ava’s care and to administer morphine or a sedative whenever Ava requires it or we ask for it.

So I should be discouraged, except I’m not, I’m actually encouraged.   See, I know that God is the one who has a plan for Ava and He isn’t finished with her yet.   The woman who cleans our room everyday at the hospital is a believer and she has this incredible faith and reminds me daily not to give up hope, that God has a plan for Ava and she tells me all the time that God is going to heal Ava and bring her a heart.  Even though I sometimes think her faith is a bit extravagant :), I know her daily encouragement is a gift from God.

And the truth is we don’t know exactly in what way God is going to heal Ava.  Is He going to provide a new heart for her on earth?  Or take her home and give her a new heart there?   All I know is that I can fully trust Him, even with the difficult knowledge that His plan might be to take our baby away from us, which would be so painful.     But I just had the opportunity to pray for another mom who is waiting for a heart for her daughter, and being in a position that God can use me to pray for others encourages me again still.  Plus there is this verse…

Now to him who is able to do far more abundantly than all that we ask or think,
according to the power at work within us,
to him be glory in the church and in Christ Jesus throughout all generations,
forever and ever. Amen.
Ephesians 3:20-21 ESV

God can do more in this situation with Ava than I could ever imagine or think.  Praise God, how wonderful that He can encourage my heart even on a day like this.  He is good!

A Little Stress Relief

We got the best kind of stress relief this weekend, we went home!    After my “episode’ on Friday, or as my dear darling husband likes to call it, my cry for help (oh haha,  he’s so funny) I was more than ready to go home and look at something other than an inside of a hospital.    It was hard to leave Ava, but I knew that we were leaving her in the care of great nurses, and I also knew that if I didn’t  get a break soon I wouldn’t be any good to anyone.

So we left Saturday morning after I went in to say good morning to Ava, and we got home in two hours which is amazing timing.    And it was great to sleep in our own beds and spend some time with friends and family.   Even though when we drove in the driveway it looked like our house hadn’t been lived in for years… a week of rain and warm weather and every bush and shrub on our property decided to grow like they hadn’t grown before and things looked rather neglected.  But it gave Jason something to do and thanks to his hard work, things look much better now.

It was good being home, but weird and sad in a way too.  First off, there were reminders everywhere of Ava and I found it tough going to sleep the first night with her play-pen still up beside our bed.    Jason actually suggested the next day we should take it down and I did and that was a good thing.   Especially because if Ava does get a heart we will need it here at the Ronald MacDonald House, and if she doesn’t get a heart and doesn’t come home,  well…. I actually put quite a few things of hers away this weekend for that very reason.

Erik, Will and Sarah had a wonderful time with Oma and Opa this past week and to be honest, I’m not sure they wanted to come back to us.   But my parents brought them home yesterday afternoon and it was great to be together as a family again.  And for a little while it did feel like we were a normal family just enjoying our daily normal life.   But then we had to pack up and head back to Toronto and I’m so grateful we made it here tonight just before the rain started and the flooding began… God’s timing is perfect!

I did brave the wild, wet, weather and walked over to see Ava at Sick Kids after we unpacked.   I don’t usually like to walk in a thunderstorm, but you know you are a cardiac mom when you pray that you don’t get struck by lightning… but if you do get hit, you hope they can at least donate your heart. 🙂  I guess that’s horribly sad.   But when you are waiting for a heart you start to think in weird and wonderful ways.   Actually, the rain was so bad, that when I walked in to the hospital,  they were asking people on the loud-speaker to move their cars as the underground parking was flooding… that was surprising.  But apparently Toronto got 74 mm of rain tonight,  which is just a little less than their usually monthly average, so as you can imagine it’s pretty wet here.

And then Ava.   She is doing OK,  but we are a little concerned for her as they told me that she started sweating  all over today.   And it’s not just a little bit of clammy forehead like she is apt to get, it’s all over soaking sweat.  So Ava’s doctor was concerned and started her on antibiotics in case she is getting sick and they are keeping a close eye on her like always.  When I was there with her tonight, she wasn’t crying, but not really happy either and her sweating was a bit disconcerting.   She still prefers to be on her CPAP than off, and I also thought that she looked puffy tonight, so we will see what tomorrow brings.

This is not an easy life and although I long for ‘normal’ in some ways,  I would rather go through what we are going through and still have Ava with us.    And I’m so grateful for a few days to recharge our batteries, a chance to go to our own Harvest church and worship with our family there,  and experience even just a little stress relief.     Thank you Lord, we are very grateful.

Too much excitement

Well Ava had a great day,  I wish I could say the same thing about myself!

It all started when I was sitting holding and rocking Ava around 9:15 am this morning in our room at the hospital, when I noticed a queer ache in my side.  It quickly progressed to needing to put Ava down and going to sit on the bed/couch in the room, to having to lie down in the room, to having the cleaning lady in my room bringing me the garbage can so I could be sick.

The pain on my flank and side was so incredibly bad that I texted my friend Tanya who was across the hall to come and she got the charge nurse to come see me.   She noticed how white I was, and they took my blood pressure and then put me in a wheel chair and rushed me over to Toronto General hospital, which thankfully is just across the road.    I was in agony and thankfully they got me in quick and stuck an IV in me and gave me morphine.  Now I have had 5 children and have never had an epidural and I swear this pain was much much worse than child-birth, and that’s saying something.

The morphine helped and I was conked out, but around 12:30 pm the pain subsided, right before they came to get me for an ultra-sound.   They didn’t see anything on the ultra-sound, but the tech was pretty sure I had passed a kidney stone, as she could see some evidence even though she couldn’t see a stone.     I eventually left the hospital at around 3:30 pm,  without the Dr’s at Toronto General really saying anything, other than the ultra-sound had all been clear, so I went back to Sick Kids.   But when I talked to Paula,  Ava’s  nurse practioner this afternoon,  she thought that I definitely did have a kidney stone as she had one two years ago with the exact same symptoms.    Can you believe it?    I just have to praise God that I passed the stone in a matter of a few painful hours, rather than a few painful days, but I’m just in shock that I had one at all.  Really, after everything else we are going through, I had to have kidney stone? 🙂     It’s cool though because our prayer team at church kicked in right away and I know that made a difference and I wanted to say thanks to everyone who was praying,  thank-you and know that God heard your prayers!

And the rest of our family is doing well, the kids are having a ball at Oma’s & Opa’s and Sarah is enjoying the time being an only child here with us.  Even though she’s spent quite a bit of that time with Tanya (Aleeda’s mom) who has been amazing and watching her for us while Jason and I have been spending quality time with each other at such places as the hospital. 🙂

Ava had a good day today too and she’s got just the best smiles for us, but still is very dependant on her CPAP.

Thanks again for your prayers, especially on day’s like today that contain too much excitement!

I hope He will…

Ava is seven months old today – where is the time going?     And she was  feeling a bit better which was nice to see.    She got a blood transfusion yesterday so that helped her hemoglobin levels and that meant her colour was better and she had a bit more energy.    But she was still a bit congested with extra fluid, and that made her tired quickly, but thankfully she was able to come off of her CPAP for over 4 hours today so that was a huge improvement over the last few days.   She is still battling low-grade fevers that go hand-in-hand with higher heart rates,  but at this point the Dr’s are starting to think that they are heart- function related.   So we all just keep a close eye on her and give her Tylenol to help bring her temp down, and make sure she gets lots of rest with her CPAP which keeps her heart rate down.

And we got a little chair for Ava to eat in today!     The occupational therapist and I have been attempting to give Ava solids for a while now and today she was really enjoying her puree pears and took 15 mls of milk from a sippy cup!   Which may not seem like much, but for Ava is a huge feat and I was very very proud of her… sweet little miss.

But the big news today in Ward 4D was that a heart finally came in!!!   There hasn’t been a heart come in since April,   and with so many kids waiting for transplants it was getting discouraging for everyone.    So all the dr’s and nurses were pretty pumped today.   Now it obviously wasn’t a heart for Ava, or even Aleeda which is too bad… it went to another baby who is 3 weeks younger than Ava.   And that gave me the opportunity to discover that no matter how happy you are for that other family, it’s also a very emotional thing to realize that their child now has a chance at life when your child might not.    In this case however, the transplant nurse today was very open in saying that because the heart was coming from far away it needed a recipient that could receive it quickly.    And the little baby that got it had never had surgery before and he was going to be straightforward, whereas both Aleeda and  Ava have had surgery before and the operation would have taken way long on either of them (that’s assuming it would have worked for either of them) and the heart wouldn’t last that long.

So the way I look at it, is that the little baby boy who received a heart today, received the heart that was meant just for him.   That means I don’t have to be jealous or upset, and praise God I’m truly not.    But it does make me happy to realize that hearts actually do come in…. it’s pretty exciting.    And everyone says that hearts come in waves, and if that were true than more are on their way and who knows… maybe Ava and our friend Aleeda will get their hearts soon!     How wonderful would that be?    I know that I have renewed my prayers for a heart for Ava, I know God can provide one… so I hope He will!

Congestive Heart Failure

Well thankfully this morning Ava is feeling much better.  They finally managed to get some fluid off of her and so her fluid balance is less positive and her liver is back down to a normal size.   Basically Ava is struggling with heart failure and all that it entails.   I actually looked up heart failure so I could understand better what was going on with Ava, and now you can too because I”m going to share it with you. 🙂

So… congestive heart failure as defined by the nice people at MedicineNet….

Congestive heart failure (CHF) is a condition in which the heart’s function as a pump is inadequate to deliver oxygen rich blood to the body.

So there you have it.   Ava’s little heart is doing such a terrible job, that she’s not able to properly profuse oxygen to her entire body and this causes alot of problems.  Here are some of the problems as explained by them…

  • The weakened heart muscles may not be able to supply enough blood to the kidneys, which then begin to lose their normal ability to excrete salt (sodium) and water. This diminished kidney function can cause the body to retain more fluid.
  • The lungs may become congested with fluid (pulmonary edema) and the person’s ability to exercise is decreased.
  • Fluid may likewise accumulate in the liver, thereby impairing its ability to rid the body of toxins and produce essential proteins.
  • The intestines may become less efficient in absorbing nutrients and medicines.
  • Fluid also may accumulate in the extremities, resulting in edema (swelling) of the ankles and feet.

So you can see that trying to keep Ava healthy and happy until she can replace her terribly functioning heart with a new one is a lot of work and a very fine balance.    Yesterday, she was so fluid over-loaded that she just couldn’t breathe without her CPAP on, so  she was only off an hour or two in the whole 24 hours period.     And then not being able to breathe makes her so tired.    Even now she can’t do much more than have a quick cuddle and give out  about a dozen smiles before she is just pooched and she needs to go back to bed.   She hasn’t gained weight in ages, she is still hovering right under 6 kilos… so right around 13 lbs.  She’s probably the same weight she was when we arrived almost 2 months ago in May… poor baby.    So she is just a wreck.   And it’s hard because we know there is no way she can get better without a new heart and since heart’s are hard to come by,  we just wait and by God’s grace we are getting through this as best we can.

Thankfully for our family, my mom and dad took 3 of the kids home with them this week so that they can run wild and free like little children should and not be cooped up here in the big city.  We kept Sarah with us because of her diabetes, but she is thrilled to be like an only child for a few days.   It’s just good for everyone, because I can spend more time with Ava at the hospital without feeling guilty that I’m neglecting the kids here and Jason can have a break from being the primary care giver to four very active healthy children.

Through this we can say that God is good.  We  are so grateful that never once He has asked us to do this on our own and He is always reminded us that He cares for us and Ava!!   It sometimes seems like too heavy of a burden for us to bear… but I was reminded again of one of my favourite passages of scripture that I’ve shared before…

Isaiah 41: 27-31

Why do you say, O Jacob,
and speak, O Israel,
“My way is hidden from the Lord,
and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
    they shall mount up with wings like eagles;
they shall run and not be weary;
    they shall walk and not faint.

Amen.

July 1st

It’s July the 1st and so I will say Happy Canada Day!    We live in a great country, and as you can imagine I am very grateful for our Country today… a country where we get amazing health-care without every having to worry about paying for it out-of-pocket.   And Sick Kids is a pretty amazing place and I’m proud that it’s Canadian too.  🙂

And today Sick Kids put on a Canada Day carnival for the kids, with some food and games and prizes and the kids quite enjoyed it.   I was glad the kids and Jason could come to me, because I spent the entire day at the hospital with Ava.   When I got there this morning Ava seemed really tired after having a quick cuddle with me, even though she had just been awake for an hour.  So we tried to put her down again with her CPAP on, but she just didn’t want to settle – and her heart rate kept rising.   And then of course, as always, just when you think you have your baby settled… the woman from the phlebotomy (blood-work) team shows up to take some blood from your almost sleeping baby who doesn’t feel well.   You can imagine how I felt.  So I felt that, plus I knew that getting poked in her arm would send her heart-rate through the roof and it was already high and that worried me.  But since Ava had already been given Tylenol and Advil and the blood-work had to get done, she got poked and her heart-rate did go up, but we gave her some morphine on top of everything and were able to get her settled, thankfully.

Except then we realized then that she felt very warm, and when we took her temp we saw that she had spiked a fever of 39 degrees.  Poor baby.  So we put some ice on her head and got her undressed and she finally fell asleep.       She has been having fevers again the past few days, so they have started her back up on antibiotics in case of infection.   And her blood-work shows that her white blood cell count is a bit high, so it would seem that she is fighting something, again.  Just like a week and a half ago when she had to go down to critical care.  I wish I knew what on earth was going on with her.   But I think part of the problem is that because Ava’s heart is so bad, even the smallest infection is going to wreak havoc on her.   And that makes us all worried because Ava is not really in a position to fight anything off right now.  She could really use a week or two of being well to help get some reserve back.    I am pretty thankful for her CPAP though, because once she does fall asleep on it, her heart-rate and respiratory rate goes down significantly and I know it helps her and makes her feel better.   I won’t be happy if she needs to be on it more than she can be off of it.  But I guess we will just wait and see.

She did have some smiles for daddy and the kids when she woke up from her 7 hour nap later this afternoon, so it was so nice to see her happy.  But again, it didn’t last long, and she quicly became tired and her temp started going up again and so we quickly bundled her off to bed.  So we will see what tomorrow brings for our sweet Birdy.

So here is to a new month that hopefully will bring a new heart for Ava and our friends who are also waiting for hearts… Aleeda our little friend here with us in Toronto, and a friend that we’ve been praying for in the US – Sofia – who also has hypo-plastic left heart and Turner’s Syndrome just like Ava.    We all can tell you that waiting for a new heart while watching your child’s health deteriorate is not an easy journey to be on, but we all believe that by God’s grace we will get through this, one day at a time!!!