Wednesday, November 12, 2014

Another delay...

Last week Jake was hospitalized at the Janeway for 5 days, we had brought him in because he was coughing, vomiting when he coughed, and his Oxygen saturations had dipped to low 70s.  We spent 4 days in PICU and one on 4Med with Jake. The nose swab eventually proved that Jake had RSV (Respiratory Syncytial Virus), which we had been told was one of the worst things for heart baby to get.  Given that Jake is no longer a "baby" he was able to fight it off with the help of oxygen.  Jake recieved Synagis shots to help prevent RSV last winter from December to April, and these should start up again next month to help prevent a occurrence.  I'm so very thankful for my Mom and Dad for their help once again.  Mom stayed each night with Georgia at home, and while Jon was working in the daytime Mom and Dad came so I could go home to shower and eat real food.  Here are some pictures from that "fun" week :)

The night Jake was admitted...he needed 100% oxygen.  He was so sick.

A few days later...

All discharged! Walking out on his own steam...

Since we've been home Jake has been much happier.  His oxygen saturations are still low for him, but as long as he has no extra work breathing cardiology says that is ok.  Besides being a little slower and sleepier than usual, Jake has a lingering cough that makes him quite uncomfortable at times.  We had been waiting to hear from SickKids whether this admission and RSV diagnosis would change the date of Jake's G Tube surgery, which has been scheduled for December 3.  Today we finally heard back - unfortunately, it does indeed delay the surgery for Jake.  We are now rebooked for January 21, and will need to keep Jake healthy until then.  Easier said than done, my dear!

On Saturday Jake  vomited two of his feeds, along with his NG late at night.  We didn't replace the NG or the feeds that night because Jake was coughing so hard.  The following morning this happened...

A new record of 95ml! Not all at once, but in small portions - first 55, then 22, then 15, to make up the grand total of 95 by the end of the day.  A new all time high for Mr. Jake, it only took him 19 months to get there.  I'm so proud of this accomplishment but at the same time I feel like it's such a Catch 22.  I know Jake can drink his fluids.  I know this happens only if he is thirsty.  In order to learn to drink more he needs to feel thirst.  BUT. With his narrowed left pulmonary artery dehydration runs the risk of forming a blood clot which can have catastrophic effects on him.  So, we can't let him actually be thirsty, but if we could I really and truly think he would drink.  It's such a frustrating thing for me to think about.  Jake can do it.  I know he can.  But we can't create the ideal conditions that would allow him to want to drink.  Heads they win, tails you lose.  Oh dear.

This weekend coming up the Heart and Stroke Foundation and the MUN school of Nursing are putting on a conference called Living With Heart Disease: The Newfoundland Story.  I'm really excited, as there has never before been a conference with a focus on congenital heart disease (as opposed to acquired heart disease) and I have been part of the planning meetings since the first stage.  I've been invited to sit on the panel at the end of the day, as a Mother with a child with a CHD.  I'm super nervous about that, but I guess they knew what they were doing when they asked me? The first presenter that day is Jake's own cardiologist, speaking on Congenital Heart Disease across the lifespan - I fully expect that to be a fascinating half an hour.  The next presenter is baby Sara's own Mom, Danielle.  Remember miracle baby Sara? Yeah, her Mom! It's going to be a good day.

Our whole family, except Jon who hasn't been feeling well, has now gotten the flu shot.  Georgia fought hers this year, which really surprised me as she has never done that before.  But we made it happen.  I came across this article:  which lays out the most logical argument I have come across yet for why the flu shot is not dangerous as anti-vaccination theorists like to claim.  It's a worthwhile read if you are having any doubts about the flu shot for yourself or your family.

I missed posting about Halloween so I'll share these awesome pics before signing off...Last year for Halloween Jake was a sickkids surgeon...this year that costume still fit!

Here at 6 months old

Here at 18 months old

But of course he also had a new costume...Here are my spooky skeleton girl and crabby boy :)

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