Faith

Yesterday morning Jeremy and I showed up at the hospital for rounds just like any other day.  Except this day was different.

As soon as we walked into Knox's room we knew just by looking at him what was happening: He was NOT getting better.  He wasn't even staying the same.  Unless something changed, he wasn't going to make it.

It's not like he drastically changed overnight.  For the last week or so, Knox has very gradually gotten worse.  Every day he gets a little bit puffier, puts out a little less urine, and breathes a little bit faster. Yesterday was no different, but something clicked in our hearts and minds that morning.  If we don't do something Knox is going to die.

After rounds I spent some time alone with Knox.  I held his hand and stroked his hair as usual.  And then we had a conversation.  I told him that I love him with all of my heart, and that I want him to be happy.  I told him that I wouldn't be angry with him if he wanted to give up.  I told him that no matter what he chooses I would do my absolute best to make sure he gets what he wants.  Then I asked him if he wanted to go Home.  I asked him if he wanted to stay with mom and dad.

And when I asked if he wanted to stay he squeezed my finger. so. hard.

Understand that this kid is not mobile.  He is so puffy that he can barely move his fingers right now, let alone squeeze.  He also is on more sedation than he was a few days ago and has been sleeping almost all day and night.

Now I know this might seem silly to some, or just a coincidence, but I know in my heart that Knox was trying to tell me something.

But, what could we do?

We went about the rest of our day in tears.  Racking our brains trying to find some way to help him. 
He is now too sick for a transplant, and for the surgery I mentioned in our last post.  He is too small for dialysis, and ECMO (the nasty bypass machine that he was on before) is too risky at this point.  It seemed there were no options left. 

Then I got on my knees and I prayed. 

I didn't pray how people pray when they are at church or in public and sound all refined and collected.  I prayed like a crazy person.  I sobbed and sobbed and eventually ended up on the ground in a ball.  I can't really tell you what I said because it was more like an incoherent jumble of words and thought that only makes sense in my head.

And then we got a phone call from the doctors.  They wanted to meet with us.  They said they think they found something.

Right Ventricular Assist Device.  A little machine that does what the right side of the heart is supposed to do.  It will basically bypass the leaky valve and do mechanically what the surgery they were talking about previously will do permanently.  Their hope is that this will allow his heart to pump strong enough to get blood to the kidneys and help them to get rid of the fluid.   When the fluid is gone then everything else in his body will work better, and in a few weeks he would be well enough to get his surgery.  If this machine works it will also be a good indicator that the surgery they had planned for him will also work.

Of course there are risks.  He might not tolerate the process of getting hooked up to the machine.  They might not be able to get the machine hooked up.  It might not work.

The biggest risk is that this hasn't really been done before.  These devices are meant for the left side of the heart, to help patients hang on while waiting for a transplant.  The doctors couldn't even find medical literature to support using this machine in this way.  We are operating on the skill and knowledge of our surgeon and doctors, and mostly on faith. 

But, its something, a last resort, and if we don't try it he won't have a chance at all.  So this afternoon Knox will go to the operating room for his last fighting chance.  It will either work, or it won't.

Whatever happens, we know we have all tried our absolute best to help him. 

The never ending saga of Knox's heart

"If you are born with a heart defect, this is the one to have."

I can't count how many times we have heard this sentence since Knox's initial diagnosis. Everything we read about his condition was pretty straight forward. Transposition of the Great Arteries: 95% success rate, pretty quick recovery, normal life after the procedure. In. Out. Done.  


And it's true.

The only problem with prenatal diagnostics is everything is so small that it makes it difficult to get a good idea of what is really going on.  By the time Knox was ready for surgery the doctors identified some additional problems with his heart.  He also has a Ventricular Septal Defect (VSD), an aortic arch that curves to the right instead of the left, and mild regurgitation of the tricuspid valve.

While none of these things alone are a huge problem, the combination has created a problem that can't be fixed easily. The type of Transposition he has (D-TGA), along with the patch they had to make to close the VSD pulls on his tricuspid valve in such a way that his regurgitation (the leakiness) has gone from mild to severe. And that is the cause of all this fuss.

One Stupid. Little. Valve. A valve that is too small to be replaced (he would have to make it to 5 yrs for a replacement), and too complicated to repair. The doctors have essentially scanned his entire body (and continue to do so), searching for  ANYTHING else to explain why he can't tolerate the leakiness (most babies don't have a huge problem and grow out of it) but have found nothing.  They are completely stumped.  


About two weeks ago, Jeremy and I had a conference with all of the doctors involved in Knox's care to discuss a path forward. The only solutions we can come up with (so far) are to bypass the valve completely (essentially living with a 3 chambered heart), or get a heart transplant. (Of course, there is always the hope that he will miraculously heal to the point where he wouldn't need any procedure at all.)


In order for him to be considered for either of these procedures he needs to be at least 3 months of age, and hopefully get a little healthier during that time (due to the medications he's received, the trauma from his surgeries (he's had 2 so far), and the passage of time in the ICU, his kidneys and lungs are getting sicker).  


The doctors have now told us that the chance of him not making it is greater than the chance that he will make it, and although they haven't given up hope, have officially given us the right to say enough is enough, if we feel that Knox has been through enough.  Heavy stuff.


So the question is, where do we go from here?


For now, we wait.  


We wait until July 24th and see how he is doing.  We wait to see if he wants to stay on this earth, or if he is ready to go home.  And in between the waiting?  We pray.  We love.  We spend time together.


And we don't take for granted one single second that any of us have on this earth.