Going forward…

Well I think my theory is busted… my theory about how perhaps if Ava’s heart-rate stayed low she wouldn’t get a fever.   Last night Ava received morphine every 6 hours, which definitely kept her comfortable and helped her sleep, but this morning her temp came up again.   Oh Ava.   So on rounds today we discussed that since  we have never found any real infection in her blood, and Ava has lost so much blood due to them testing her that she is close to needing another blood transfusion, we are no longer going to chase these fevers.

That means we are going to stop trying to find a blood infection and after this current course of antibiotics is done, she won’t be prescribed any more when she gets high fevers.   Going forward we will keep an eye out for other signs of infection in Ava, like markers in her blood for inflammation, or increased white cell counts…  and if there really is an infection, they will treat it.  But it does seem like Ava’s fevers are more related to her heart function – or heart failure I guess, and no amount of antibiotics is going to help that.  It’s probably harder on her to be getting these strong antibiotics in the long run.  So even though it would be nice to find a definite infection and a source of these fevers, I’m relieved that they won’t have to take more blood from Ava than they already have.

And today Ava was still fluid over-loaded, so once again was feeling awful, and it was hard to see.  I just hate seeing her so uncomfortable and we know that she can’t breath when she is like that so she didn’t come off her CPAP at all today.   They have increased her lasix and she had some great wet diapers today, and even by the end of the day seemed to be feeling alot better.  And that was great because I was able to take the girls with me to the hospital today and Ava actually smiled for Sophia, it was wonderful to see.

And while Ava was napping today – the girls and I checked out the Starlight room at the hospital.   It is on the 9th floor and it’s amazing!  I can’t believe we have never been there before, with all the time we’ve spent at the hospital.    It has an out-door patio and it was so nice to sit there and relax for a few minutes while the girls were playing.   Here is Sophia in the outdoor portion…

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And you can see how some of the rocks are painted… so I painted one for Ava. 🙂

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Jason and the boys came later too and had fun checking out the Starlight room for themselves and before we left today we all gathered around Ava’s crib and prayed for her.

It’s hard seeing our baby struggling so much… I hope there is new heart ready for her soon!!

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!

Small, frail and weak

Our sweet little Ava… she’s doing pretty good all things considering.  But when I was holding her today she just felt small frail and weak.   She really hasn’t gained any weight in the past couple of weeks and being so sick has drained any strength that she did have and she just doesn’t have any reserve left at all.  She can’t take much before she gets tired and irritable.

She did have lots of smiles for everyone today which was wonderful, but when our Sarah saw her this afternoon finally – after not being able to see her for a week – she said that Ava didn’t look pretty anymore.  Ava’s eyes are rather red, and she’s much bluer around her nose and mouth.   What she really needs right now is a blood-transfusion as her hemoglobin is low.  Unfortunately they are weighing the risks for one as introducing new blood to her system could result in her developing more anti-bodies against foreign bodies in her system, and that would include a new heart.  We don’t want that, because the more anti-bodes she developes, the more high-risk a transplant becomes.

The good news however is that because Ava is on CPAP now for sleep – we have switched teams at the hospital.  We had been followed all along by the Single Ventricle team – a team that follows the care of all the babies born with only half working hearts – either the left or the right side –  but now that Ava’s main problem’s are mostly related to her lousy heart function, we are being followed by the Heart function team.  I love our nurse practitioners and Dr’s on the SV team, but as I said to them, I’d rather be an average patient on the Heart function team then the patient in the worst shape on the Single Ventricle team.  🙂  And to be honest, the Dr we saw today with the Heart function team was more optimistic about Ava than anyone else has been lately.  He was confident that if we can get some issues with Ava sorted out – primarily her fluid balance – then hopefully she can be stable for a while.    It was good to hear, because it’s good to have hope, even though he doesn’t know Ava like the SV team did.   But we are taking the change from the hands of God knowing that He knows what’s best.

Actually I have to share that the Heart Function team is the new sanitized name for the team that used to be called the Heart Failure team… ha!   Gotta love name changes, but in this case I agree that Function sounds better than Failure.  Failure does NOT have a nice ring to it.   Just like we are also being followed by the PACT team – the Paediatric Advanced Care Team, which used to be called the Palliative and Bereavement Team.  Aren’t names wonderful? 🙂   Now the PACT team has a name that is practically meaningless, but at least it doesn’t sound so grim.   These new team names seem much more optimistic, even though they are still dealing with the same sad stories.

The PACT team has actually been amazing… they are great to talk to and have supported us in many ways, and one way is that they provided a professional photographer to come and take a family picture of us with Ava.   We had never had one done and I would have regretted it forever if we didn’t have a pic of all of us together.   So the photographer came last week and I’m so glad it’s done and I can’t wait to see the end results.  The team has provided alot of support – and not to worry – it doesn’t at all mean we’ve given up on Ava – it’s just that we understand that she can’t live with her heart the way it is now, and it is failing.  So her death is something we might have to face.  Hopefully not if God wills a replacement heart for her, but this team has been a huge help to us so far, and will be if we hit a time of crisis.

In other matters – the kids had their final school wrap-up “Fair” today – and we are once again thankful to the Ronald MacDonald School where are kids were able to finish out their school year.   They preformed a play today that was really cute and I’m glad going to school has been able to keep some ‘normal’ in their lives.

So back to Ava – she might be frail and small and weak, but I know who is carrying her and we have faith.   Thanks for praying!!!!

Isaiah 40:11

 He will tend his flock like a shepherd;
 he will gather the lambs in his arms;
he will carry them in his bosom,

AMEN

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!!!

Strength for Today

Sometimes you need extra strength from God just to get through the day,  and yesterday and today were days like that.

We got the results of Ava’s cath yesterday before she was even in the recovery room.  The Dr who did the cath – who is also chief of cardiology here –  came to find Jason and I where we were waiting in Ava’s room.   When I saw that he also brought with him some back-up, in the form of the current staff cardiologist, I started wondering if the news might not be so good.

He explained that Ava had tolerated the cath well but during the test they found that Ava’s tricuspid valve was very leaky and this was making the pressure in her lungs high, which is not what anyone wants to see.    With high pressures in her lungs, Ava can’t get the next surgery she needs – the Glenn – which requires low pressure in the lungs so that de-oxygenated blood from her upper body can by-pass her heart and just flow passively into her lungs.

We asked if they would consider going in and doing a valve repair and then doing the Glenn – but he replied that Ava’s heart should be compensating for this leaky valve, but it’s not, and so there is a concern is that Ava’s heart is just not as strong as they would like it to be.

This news was a crushing blow… I never for once thought that Ava wouldn’t be able to get her Glenn.  And even though Ava looks great, it’s hard to hear that her little half a heart is just not as strong as it needs to be.

But we still don’t know what the future holds and this is definitely not the end of the road.   As things stand right now, they have put Ava on a heart function medication – milrinone – at least for the weekend, which will help her heart function in case they do decide to do some kind of surgery next week, like a valve repair.    Or they might decide to leave her on the medication for a few weeks and then repeat the cath.

But we really won’t know anything until Tuesday, when the surgeon and our cardiologist and many other cardiologists will put their heads together and have a discussion about Ava and come up with a plan for her.

So it’s very hard.  Especially when Ava and I are here at Sick Kids and Jason has now gone back home to be with the kids.  Until we get an apartment again at the Ronald MacDonald House we just can’t be together as a family,  but we are praying that God will be gracious and move that process along quickly, because I have a feeling we are going to be here for a long long time.

And so once again, we are learning how to live just one day at a time, trusting God that He is good even when life is not going the way we want it too.  I am finding all this right now incredibly tough, but that old hymn Great is thy faithfulness has been on my mind,  especially the last verse says this…

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!” “Great is Thy faithfulness!“
  Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

God will grant me strength for today and bright hope for tomorrow which is something I desperately need right now, and am so thankful that God is faithful all the time.

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. 🙂

Crazy week

Well you’ll never guess where I’m writing this post from today… so I’ll tell you,  Sick Kids.

Ava and I and Jason’s mom came down yesterday for some clinic visits, but instead of going home, Ava got admitted and we are at here for at least the weekend, such a bummer.

So this crazy week for Ava seems to have all started last Sunday when my girls accidentally pulled out Ava’s ng tube just as I was going to get Ava ready for church for her dedication.  It was a bit stressful, but I got it back in, but even during her first feed with the reinserted tube,  Ava vomited up some of her milk.  That wasn’t like her, so by Tuesday after she had spilled quite a bit of her milk many times, I talked to both the Nurse Practioner here in London and in Toronto,   and we decided that her ng tube probably needed to be replaced.   So I replaced the tube and she seemed much better and that was good.  That was NG tube insertion number 1.

But the next day – Wednesday – when I gave her her daily dose of aspirin via her ng tube,  it got stuck in the ng tube and blocked it completely!!!  Oh man!  I’ve never had that happen before, but the tube I had put in the day before was a different ng tube than the kind we’ve always used from Sick Kids, and it had smaller holes and I guess I didn’t dissolve the aspirin well enough.   So after calling in some reinforcement, we replaced her tube again.    That was NG tube Insertion number 2.

But then her vomiting increased again and so once again I thought it may have been the tube, so Thursday night before her 11:00 pm feed, I inserted it once again.  Tube Insertion number 3.  And at that point I seriously thought that if we weren’t going to be going to Toronto the next day I would bring her to emerg in London, because the vomiting had been going on too long.

So Friday – we left for Toronto early and Ava had a GI consult for a G-Tube and they did say that she was a candidate, but in all likely hood she wouldn’t have the surgery until after her Glenn.  But during the appointment, Ava – who was sleeping in her stroller – didn’t look so good as she was breathing fast and her heart was beating faster too.   The nurse ran to get the Dr and I picked Ava up and she calmed down and was better by the time the nurse came back with the dr, so we finished the appointment and that was that.

Then Ava had her echo at 1:30 pm and after that we saw the Nurse practioner with the Single Ventricle Clinic.  But Ava was up to her old tricks and she was breathing fast again and her heart rate was fast and when the Cardiologist came in he said he wasn’t comfortable sending her home like this and wanted to admit her.

So she was admitted and the poor turkey had to get a chest x-ray to make sure nothing was brewing in her lungs and so before that, we once again inserted another ng tube – a Sick Kids one this time.  Tube insertion number 4.   But that tube just seemed to want to come out, so we inserted it again.  Tube insertion number 5.  But that tube had a hole in it, so had to do it again,  tube insertion number 6.  But the next tube, the wire didn’t want to come out, so that ng tube leaked from where it had scrunched up where the wire got suck.   So at 11:00 pm, we once again inserted another ng tube down my daughter’s nostrils.   Tube insertion number 7. Poor poor baby.

So here we are.   The plan for today is to give her more lasix and slow down her feeds to see if that takes care of the vomiting and the fast heart rate and breathing.   By Monday we should see if that’s enough.  If it’s not, it just might be the source of all Ava’s problems could be her heart, as her echo showed decrease function and more leaking from the valves.  Not good.  So if they are still worried about her heart, we will probably stay longer.

So please pray that it’s just a blimp that can be remedied with meds and rest.   God had a plan for Ava and for us, so even though here in the hospital is not where I want to be, I can be here in faith and trust.

God is good.  All the time.   I just never want to insert another ng tube into Ava’s nostrils ever again!

Amen.

 

Back to school

So Sarah is back to school, much to her chagrin. 🙂   Thursday was her first day back and she had a great day, and then Friday morning she was back to her old tricks and saying she didn’t want to go – but thankfully Jason and I know that’s ridiculous because she adores her teachers and always says she had a great day when she gets home.

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An it looks like things are going to go well at school.  Her classroom has an alarm clock now that goes off for her snack times, and at lunch-time she goes to the office with one of her teachers to check her blood for her sugar levels.  And I think for the first while a nurse from the CCAC will be there at lunch too to make sure Sarah checks her blood Ok and eats all her lunch.   And that’s important because she needs to eat her carbs so she won’t get a low.   We are so appreciative to our wonderful school that has been doing everything they can to make sure that those that are taking care of Sarah know how to recognize the signs of highs and lows and I’m sure it’s tough for Sarah’s teachers as it’s one more thing for them to think about in a busy class of kindergarteners, but they have met the challenge and have just been wonderful. (Thank you Mrs. Murphy!!)

And there is a ton to learn about diabetes and I know that I still need to learn a lot.  Jason has been doing so much with Sarah that I always refer to him, but I’m hoping that when things aren’t so intense with Ava that I can get more involved.    It’s kinda funny though in terms of God’s timing, because if Sarah had been diagnosed when life was normal and I had taken on the learning and Sarah’s care, I’m not sure her diabetes would be managed so well.   Jason is a bit of a diabetes dictator and keeps Sarah on track quite strictly.  One night when Jason went to bed early I gave Sarah a snack of sliced strawberries, about 1/3 of a cup, so maybe just 3 carbs and he nearly bit my head off when he found out because Sarah isn’t supposed to get bedtime snacks.   And the funny thing is she was saying to me, ” I really don’t think  I should be eating this” but I convinced her otherwise,  crazy momma.   Boy,  I really hate diabetes.  And Sarah has been saying that lately too – she just hates it and when she says it, it  makes me want to cry because I know it’s not going away.     But we press on.   And I had a great idea tonight when I went for a walk about exploring more about living with diabetes, so stay tuned.

And Sophia is getting a cold, oh no!!!  I should have known as she’s been wanting to nap a lot lately…

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Last week when Sarah wasn’t around to play with Soph went downstairs, but ended up napping down there instead of playing.  But  now that she had a cold I’m so worried about Ava, as Ava has been coughing more and spitting up.  I’ve been praying that God would protect her and I hope He hears my prayer because she just can’t get sick,  she can’t!

And this week is our echo…  so please keep praying that Ava’s heart function hasn’t decreased anymore.

Lots to pray for.    Thankfully strength, peace and joy are free when we ask God for them.  I always like to think of it as an exchange… here God, you take my worries and I will take your peace.   I can always give Him my weakness and He gives me strength.    And here is a verse for me right now as I sit here hating Sarah’s diabetes and wondering if Ava will be OK…

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 ESV

What an incredible promise and what an incredible God we serve.

AMEN.