Thursday, January 15, 2015

The best laid plans...

It's the day before we were supposed to travel to Toronto for Jake's G Tube surgery.  You read that right - supposed to - as in we are not flying out tomorrow.  It's painful for me to even type these words, but there has been another delay.  A delay in October, a delay in December and a delay in January.  I've processed this now, but we got the news 4 days ago and it's only now I can sit and type out this post.  The surgeon had a personal emergency and has cancelled all of his January surgeries.  So...our new date is February 18.  That's 4 weeks and 5 days from today.  :(

Our flights have been rebooked, at an extra fee and hassle over the oxygen assistance required for Jake.  This will be Jake's first time flying with asthma so his cardiologist has requested extra oxygen for him, and Air Canada didn't like that one bit.  After jumping through the hoops (both us and the cardiologist), it's been straightened away.  We now fly to Toronto at 5 am on the 13th of February.

In more positive news, Jake gained 4 ounces last week.  He had 6 vomit free days in a row, but has now vomited both yesterday and today so we're back to the struggle.  He's come very close to slipping back down to the 20 lb mark.  We fought so hard to reach 21 lbs and then 22 lbs, it's so hard for me to see those numbers go down.  Keep praying friends, Jake needs to start gaining steady weight.  Heart wise things are going really well, Jake had another No Change echo report on Tuesday and after the G Tube heals the plan is to start skipping months for echoes.  If all is well, Jake will have a echo every second month instead of every single month.  How lovely will that be! And his last echo was done unsedated so the plan is to try for unsedated echoes each time now and only use sedation if he is uncooperative.  That's a few steps towards simpler visits to cardiology, and I welcome them with open arms!

Here's Jake at Cardio this week rocking his "My cardiologist is better than your cardiologist" shirt, and then right before his echo showing off his muscles.

   Since Jake is still in isolation we're spending our days inside for the most part, and trying so very hard to stay well and healthy to avoid yet another delay in surgery.  It's a hard battle during flu season, but we're fighting it daily.  Last week found us at the Janeway emerge in an isolation room to check out a cough and runny nose that Jake was having.  During that stay we had a very unpleasant and panic inducing experience with a young doctor using the words "possible heart failure" to describe the look of Jake's chest x-ray.  Those are terrible words to fling at heart mom, especially if there is no basis for them.  Once cardiology was consulted we were told that there were no signs at all of heart failure, it was likely a shadow remaining from his struggle with RSV and asthma.  I aged 10 years, and I think my mom aged 20 years, while we were waiting to hear if Jake was indeed in heart failure.  I hope to never again hear those words uttered in a sentence referring to Jake.  Never again.

So, although I'm sorely disappointed that we are not getting a plane tomorrow I will count my blessings today.  A relatively healthy family, a new surgery date, no heart failure, and  4 ounce weight gain.  Woo!

1 comment:

  1. Praying for Jake and you all. He looks like a fighter. My little cousin came through heart surgery at age 2 and a half months before Christmas. He is a fighter too and is doing well now. I teach high school we will pray for him in my classes. There is power in that.