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!

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One month

As of tomorrow, June 10th, I will have been in Toronto with Ava for a month, I can hardly believe it.     I just wonder how many more months we will be here…  I wonder.

I realized today that Ava has spent over half of her short life in the hospital… and it makes me sad.    Especially when we compare Ava’s life to our four healthy children’s lives and I’m just glad that she won’t remember any of this time spent in hospital.      Today we were joking today that she needs her short-term memory erased, because right now she is hyper-sensitive to people touching her as she’s afraid she is going to get a poke, or her nose suctioned and she flips her lid multiple times a day, my poor baby.

Last night didn’t help – the turkey pulled out her ng (nasal gastric) tube around 3:00 am and thankfully she pulled it all the way out, because if she had pulled it only 1/2 way out she could have aspirated as she is on continuous feeds.   And even though I slept over with her last night I didn’t hear a sound, the nurse just found her ng  lying on her chest in a puddle of milk when she came in to check on her.  So they had to reinsert the ng and she hated every minute of it.     But thankfully this week I am already slated to attend a g-tube (gastrostomy tube) class, where I will learn all about how they insert a tube directly into Ava’s stomach through her tummy so we can feed her that way.   And then I get to learn how to change the bandages and care for it…. yahoo!   Well, not quite.   But it will be a relief to have her ng off her face, but I’m not sure I’m going to like a tube into her tummy any better.     But the girl needs to eat, and she still isn’t strong enough to do all her oral feeds herself, although now that she is starting to feel better, we are going to try her on solids this week which is kinda exciting.

And we finally had a test done and heard good news from it which was another blessing!   Friday Ava had her GFR renal study (glomerular filtration rate (GFR) renal study) to check her kidney function as a test needed for her transplant work-up.   All she had to do was lie on a board so they could take pictures of her kidneys, but  I think she got it into her head that she was being restrained for an IV poke because she freaked out.  But eventually calmed down and fell asleep… good girl.   And the next day on rounds we heard that her kidney’s are functioning fine, praise God.  Which probably doesn’t seem like a big deal, but it’s a huge deal for us because we feel like we only seem to hear bad news about Ava as far as tests are concerned.   However, they also did a kidney ultra-sound and it seems that Ava does have some reflux coming up from her bladder,  which can cause kidney damage and urinary tract infections.  So that wasn’t nice to hear, but she is now on more meds to prevent infections.  My baby, the walking pharmaceutical company.

This week might be the week where Jason and I can sit down with the transplant doctor to find out if Ava is indeed a good candidate for transplant, and then we need to decide what direction to take.   I read today something that I had already heard… but it said that a heart transplant is exchanging an acute heart disease for a chronic heart disease.  Nice and reassuring huh?   Meaning that a heart transplant is NOT a cure all.  It’s just another journey that will involve anti-rejection meds for life, lots of clinic visits and a heart that will hopefully beat the odds to last more than 20 years.

So please keep us in your prayers as our family is happy to be together, but missing home and are not quite looking forward to a summer in the big city.   Thankfully we get to do this journey day by day (not month by month) and by God’s grace and everyone’s support,  we can face another week ahead with all it’s unknowns and uncertainties.