Joshua - Moving Forward

Hope and a future. 

That is what we have wished, prayed, and sought

 for our sweet Joshua.

One morning after some discreet paper folding behind the couch,

Joshua  presented me with a heart.

His heart. 

On the RIGHT side of his body.

Because that is how God made him.

One of the ideas that came out of our second opinion from Boston is that it might be wise to re-cath Joshua to see what is going on after a year home from China. He has only had one heart cath in September of 2011 confirming the complexity and gravity of his heart disease leaving him no surgical options due to his pulmonary hypertension gone unchecked for eight long years. But with no empirical data over his lifetime, it seemed liked a good idea to find out how he was doing and perhaps get an idea of the rate of his heart failure progression so that we could be as prepared as possible for the future. 

Our cardiologist readily agreed and we scheduled a cath for December 4, 2012. After a restful night at the Ronald McDonald house, we checked into the hospital bright and early.

 Look what the nurse had waiting for Joshua in the room. 

Yes, a panda pillow case.

Do you think you could squat on a hospital bed, play the ipad, AND be comfortable? 

Ready and waiting. What a difference a year makes. Last year, he had no English and we couldn't explain anything. This year, we told Joshua as much as he wanted to know. Which actually wasn't all that much.

Our anesthesiologist had everyone cracking up as Joshua drifted off. Something about smelly feet and Joshua would be the only one who didn't have to smell it because he had the mask on. Everyone pretty much knows us now as we are becoming frequent flyers in the heart world at our hospital.

After the cardiologist was done with his part, we were paged and we went to meet with the doctor up on the eighth floor. His report was that everything was the same. I was relieved that it wasn't worse, which is what I feared, as Joshua seemed to be conserving more energy lately. We then talked long and hard about Joshua's morbidity and what that slow debilitation was going to look like, the risks of anesthesia (huge) for a single ventricle patient and not worth any future heart caths, the fact that surgical intervention was way off the table, and an actual guess at the timeline for the remainder of his life. A hard conversation but not unexpected.

Joshua isn't the best waker-upper from anesthesia. This time he did better as we were there before he woke up but he was quite grumpy and wanted the IV OUT of his hand. I think we exasperated the recovery room nurse trying to get him comfortable.

Once we did our two hours in recovery, we did the rest of our laying still time (three more hours) up in the room with lots of food. Joshua enjoyed me feeding him each spoonful. It's fun to spoil my kids every so often and we take advantage of our time alone together!

And then the doctor walked back in.

Kicked the nurse out, drew the curtain, and sat down. 

Uh-oh.

He had run the numbers. The nitty gritty numbers that mean something when you know about Wood Units and PVR and PA pressures and calculating Ohm's law. 

Guess what? 

Joshua's pressures have come down enough with medication to put the discussion of surgical intervention back on the table.

THAT.WAS.A.SHOW.STOPPER!

The perfect definition of a one-eighty.

In the morning, we discussed how and when our son would die. 

In the afternoon, we talked about our son's future and how it may extend beyond the imaginable. 

Would the word "miracle" apply here?

After lazing around the hospital a few more hours, we were discharged THAT DAY and promptly headed to a buffet serving Chinese food. Imagine that?

Bob and I were in shock and on information overload. We kept asking each other, "Did he say ???" and "Did I hear right when he said ????"

A week later, Joshua stole the show for his roles as Rex and King Herod in a play at church celebrating the coming of the Christ child.

I was grateful that our church family got to see Joshua for "who is he is" instead of "what he is." 

Yes, he is an orphan-no-more from China but he is also an amazing person and quite a lovable character.

 

His origami skills are still in full force. 

We support the paper industry in a big way around here. 

 

We are still working on that elusive weight gain. When you are back down to 37 pounds, you get ice cream on your cereal if you want it. 

After a few restless weeks of waiting, we met with our cardiologist to process what had happened with the cath and what the immediate future looked like. Fortunately, our doctor is extremely well connected in Boston and he already had a preliminary plan in mind as to who he was going to contact to discuss Joshua's options. He will be transferring records and making lots of phone calls, all for Joshua, on our behalf!

To say this is daunting is an understatement. But we are grateful for the opportunity to know that we truly will have done everything possible for our son, whatever the outcome of the exploration with Boston may be. 

And is it any wonder that our time in Boston with Joy may have prepared us for a future with Joshua? 

Amazing how that works, isn't it?

He cracks me up!

He makes me smile.

All the time.

This precious boy has taught us how to live and love.

Could we ask for anything more?