New heart Day 602

We were up bright and early for the big day.  Josh of course asked to eat the minute he woke up but since he was limited to clear liquids unfortunately the Jello was too goopy and the Popsicles were too cold. Do we have the only toddler on earth who refuses to eat what most kids think is the "good stuff"?  So we were left with a few sips of juice and had to hope that was enough to make it until his procedure which was supposed to be at 10:30. 

When we first got there, Josh wasn't too excited about things but once he figured out how to see himself in my iPhone camera, his mood greatly improved. 

Soon after that, we were besieged by four people all at once to get us registered and checked in.  The nurses were worried that because of Josh's age he would be scared by all the stuff happening at once but with four cute girls to flirt with he was in his element.  Maybe it helps that my nurses swarm on him every time Scott brings him to the office.  His bedside nurse brought out fits of giggles by making heart sounds when she had him listen to Cathie the dinosaur's chest. 

Of course he knew exactly what he was supposed to do with it.

Then it was time to get into his cute little hospital gown and settle in for the wait.

We played peek-a-boo (of course) with the bed curtains

Built towers out of blocks

And did a lot of coloring

And just so he has reason to hate me in his teenage years, I had to capture a photo of his nonexistent diapered bum sticking out of his hospital gown.

True to hospital form they were running behind even though we were only the second procedure that day, and by 10:15, Josh was asking for chips and water.  We were able to distract him for awhile with rides around the unit in their special "choo-choo".

But by 11:00 he had had it with our excuses.   (And yes evidently all toddlers are fall risks...maybe he needs to wear that band at home too.

After a few minor tantrums when we wouldn't let him have anything we settled in for a few minutes of rocking and he was out.

This actually worked out great because when we handed him off to anesthesia at the cath lab when they were finally ready for him at noon, he slept through the whole thing.  So they gave him the laughing gas to make sure he was really asleep and got things started. 

About two hours later everything was done and we sat down with our cardiologist for the official word on all the results.  The pulmonary function test he had done the day before showed that over 99% of his gas exchange occurs in his right lung and luckily on the cath, the vessels on that side were completely clear.  The left side unfortunately would only regurgitate flow from the left pulmonary artery towards the right artery and there was no flow at all back to the heart from the left pulmonary veins.  Even with some balloon pressure our cardiologist couldn't get anything to go through and thought the veins had mostly withered from lack of flow.  So, the good news is the right side was working well and on another positive note we would avoid another surgery for now since there is no way to bypass or stent what is left.  The bad news is that while the left lung moves air, none of that oxygen makes it to his heart and body, essentially meaning he has only one functional lung.  As long as the right side works well things should go fine.  He may always feel a little short of breath but our cardiologist thinks that since it's been like this essentially his whole life, he may not ever even think about it.  He's probably not going to be an Olympic level athlete or support us on his career in the NFL since chest trauma to the right could be disastrous and opera singing is likely out as well, but otherwise he should function pretty normally.  If he becomes really symptomatic with shortness of breath or coughing from the dead space in his left lung then they would consider surgery to remove it but evidently that's a last resort in kids his size.  Since the right lung would continue to grow, it would push his heart to the empty space on the left and this would cause a marked deformity in his chest wall and spine.  So for now we do as we've been doing and try to keep that right lung as healthy as possible.  We have a follow up appointment with pulmonology in a month or two for their recommendations on how to best make that happen.

Now that he was out in recovery, what we thought would be the longest and hardest part of the day started.  In order to keep the blood clot at the vessels from dislodging, Josh had to lay flat and relatively still for over four hours.  Thankfully with the anesthesia, he slept for the first ninety minutes.

Even when he woke up he was pretty groggy but I did have to lay with him and use my knee to pin his legs down every now and again.  Luckily he loves the movie Homeward Bound so after watching that and a few more episodes of Mickey Mouse club, our time was up. 

Our thirsty toddler then tried to guzzle down half of the juice they gave him which immediately came back up.  After two more episodes of projectile vomiting, it was decided that we were spending the night. 

After all the afternoon laying around, I was finally able to get him to sleep about 10:30.  Having Mama lay in bed with him was a thrilling novelty evidently.  Luckily after that, he slept most of the night.  He would occasionally wake up and say "light" since the pulse-ox turned his toe bright red but once we figured out how to thread his telemetry wires through his pants so he didn't keep getting tangled, he was out.  I wish I could have said the same but the frightened screaming toddler in the next room over made that pretty difficult.  Overall though, I was just so thankful that Josh adapts so well and that he didn't find any of this scary since that would have made it so much tougher. 

Luckily he was able to keep down some breakfast the next morning, although this face probably tells you what he thinks about hospital food (and that IV in his right hand that kept him from using his fork)

Once they were sure he wasn't going to throw up again, we were discharged and back to life as we know it.  Just officially short one major organ this time.