No wiggle room….

I am quite bleary eyed and tired, but I want to catch everyone up so I will try to do my best to make this blog post coherent and spell things correctly, but I’m not making any promises. ūüôā

So to make a long story short, the echo we had yesterday in London showed that Ava’s heart function is decreasing, which is sad and not a good thing at all. ¬† They compared yesterday’s echo with the one we had done Feb 20 when we were in emerg and there is a noticeable difference. ¬† Now, we still don’t know if there is decreased function from the echo we had at Sick Kids last week Tuesday, as the pictures have been sent but not analyzed yet, but any decrease in function is ¬†just plain concerning.

And the trouble is that they just don’t know why this is happening. ¬† Some baby’s do so well with their little single ventricle hearts, and some don’t and it’s not something they’ve been able to figure out. ¬†I really wish they could.

But through all this our London cardiologist was very kind and asked me how I thought Ava was. ¬†I personally am not super worried about Ava, but she is having more frequent ¬†spells where she gets clammy and I’m also noticing that her breathing is faster more often and those things do have me concerned. ¬†They don’t like the clammy spells either so ¬†yesterday they hooked her up to a Holter monitor that recorded the electrical activity of the heart for 24 hours, to see if they can match up any heart irregularities with the clammy spells that she has. ¬† Perhaps there is a simple arrhythmia problem which can fixed, who knows.

And since our cardiologist also was talking back and forth with Sick Kids yesterday, we got a call last night from Paula, our Nurse practitioner there, and she said that they wanted to see us on Tuesday in Toronto, and to pack our bags and be prepared to be admitted and stay for quite a while…. and I think this time they might mean it.

As Paula explained, Ava just doesn’t have any wiggle-room – meaning she just doesn’t have that reserve that we all have that allows us to fight things off, or deal with pain or stress. ¬† ¬† Ava is just not that strong, even though she looks fantastic. ¬† ¬† That’s what our cardiologist told the Dr at Sick Kids, that Ava looks great clinically, but her echo is saying otherwise. ¬† Ava’s good healthy looks are apparently misleading.

So I’m packing my bags with a heavy heart. ¬† I’m still praying that we won’t have to stay, but it seems the writing is on the wall this time. ¬†But like Jason says, ¬†it’s not easy having her home either – although we love being here together as a family – Ava is exhausting to care for and neither of us are getting much sleep. ¬†So if the hospital is the best place for Ava, then it’s where she needs to be and maybe it will be better for us too in the long run.

So I’ll just pack and trust, and hope that they can figure Ava out and that we can get that wiggle room back! ¬†Like always, we’ll keep you posted!

Productive Paranoia

So I’m writing this today from the hospital in London – because Ava was admitted here yesterday… but not to worry, she is doing just fine. ¬† ¬†Yesterday morning I called the Single Ventricle Hotline at Sick Kids in Toronto to talk to our nurse practioner there, because Ava just wasn’t right. ¬†She had been vomiting with her feeds through the night and breaking out into cold sweats and was pale and listless in the morning. ¬†So our NP told us to go to the hospital and had us call an an¬†ambulance¬†to make sure we got to the hospital safely. ¬† And I’m glad we did because Ava was de-sating (her oxygen levels in her blood were dropping) and the paramedics were able to give her some oxygen on our way there.

In emerg I shared with the doctor that I had some concerns that her ng tube wasn’t in far enough and was causing her reflux and distress, so they ordered an x-ray right away to check placement and ¬†then we just waited to see the cardiologist. ¬†He came and ordered and echo, and thankfully we had gotten that one last week so they could compare.

Anyway, to make a long story short, the ng tube was a bit too high up, and so we could move it down, so her vomiting and reflux have stopped.   And her echo looks good compared to last week, but there is a tiny concern that her shunt may be slightly blocked.   Oh and her blood pressure is a bit high.  So we are hanging out here and waiting to see what Toronto says as the cardiologist here confers with them.

I’m a tiny bit anxious that Toronto may want us to come and hang out there for a few days, but if that was the worst of it, ¬†it wouldn’t be so bad, ¬† I could visit with all of the friends we made there! ūüôā

And so our nurse practioner Sarah said yesterday, it’s best to practice productive paranoia with Ava (as opposed to¬†paralyzing¬†paranoia… hahaha). ¬† She is very fragile, and as ¬†the¬†cardiologist¬†reminded me again last night, 10 – 15% of single ventricle baby’s die before their next surgery, so we just can’t be too careful with her.

And I got some sleep last night as the kind nurse fed Ava all night for me and gave her meds.  How nice.

We are just waiting now to see if we can go home today, ¬†and even if we can’t right away, we certainly¬†aren’t suffering and I’m so glad that Ava is in good hands.

So thanks for all your prayers and hopefully will be able to update you again soon.

Thanks again for tracking with us through Ava’s journey!