Friday, September 17, 2010

It's just another ordinary miracle today...

Life is like a gift they say
wrapped up for you every day
open up and find a way
to give some of your own
Isn't it remarkable?
Like every time a raindrop falls
It's just another ordinary miracle today
-Sarah McLachlan, Ordinary Miracle
(great song - watch the video if you don't know it!)

Over the past 6 weeks, Jay has seen quite a few miracles. I don't mean to trivialize open heart surgery, but getting a new heart valve that works as good as new was one of the smaller miracles he survived. When Jay arrested the night after his surgery, they performed CPR on him for well over an hour, and continued doing chest compressions WHILE the surgeon placed the cannulas in his neck for bypass. Just imagine that for a second - trying to cut open a tiny vein and an artery just a few inches from where someone is pounding on his chest. Miracle.

The following day the attending cardiologist was discussing what had happened during the incident. (One nurse spent the entire time writing down everything that they did to save him and every drug he was given. Jay was still connected to the monitors, so they had a complete record of his blood pressure, etc. the entire time.) His oxygen saturation never dropped below 70% during the time they were performing CPR. While 98-100% is normal, there are people walking around living normal lives with oxygen sats in the 70s. Pretty impressive work.

Derek and I were talking about all the things we see differently in hindsight. When the surgeon came in on ECMO day 2 and asked them to turn down the sedation, he was wanting to see if he would move. Looking back, we realize that he was trying to determine whether continuing on ECMO was worth it - trying to know whether his brain had gotten enough oxygen during CPR to keep him on life support.

It was no small miracle that he had no problems on ECMO. He never had any of the common issues - swelling, blood clots, ECMO circuit cutting out. And it's nothing short of a miracle that after a week of not pumping, his heart was able to kick back in when he came off ECMO. It's a miraculous technology that saved his life.

On Tuesday evening when we had finally been given the get out of jail free card, we met with our awesome CHOP cardiologist, Dr. C. She hugged us and talked about how happy she was with how he was doing. I asked her to say - honestly - whether this was the outcome she expected during the ECMO days. Her sly smile said it all, but her simple answer was as honest as I had asked her to be: "No, it isn't." She went on to say that after ECMO sometimes the heart recovers but the brain doesn't. Other times, the brain recovers but the heart doesn't. She told us that his medical team was still talking about what a miracle it was to see him laughing and talking and trying to jump down the halls of the CCU.

I don't think we really expressed on the blog just how serious the heart transplant discussion got toward the end of the ECMO week. While he tolerated ECMO very well, seven days is really pushing the limits of how long it can provide support. They were getting ready to order a Ventricular Assist Device, the Berlin Heart, in the event that his own heart function didn't recover. The VAD is designed as a bridge to transplant - a machine to support the heart while you wait (days or weeks or months or more) for a transplant. That thought was terrifying to us. The thought that another child would have to die so that ours could live ... it's just awful.

From this:

To this:

Miracle. There's no other word to describe where how we got here. It is truly a miracle to have our son back the way he was before this awful journey began.


Anonymous said...

At a loss for words, smiling through the tears! So much to be thankful for...


Anonymous said...

Welcome home, Jen! You are truly blessed with a miracle child, and we are thrilled, delighted, and thankful to have you all home safe and sound.


Anonymous said...

Ok, twice today you have made me cry with this blog. I am a sucker for miracles, and especially when they are related to my favorite little ring bearer! I am SO SO SO happy that he is back to his good ol' sweet, fun, smart self. I am even more excited to give him a hug in 3 weeks, I can hardly stand it.

Beth said...

It's so odd but comforting to think that Jay was oblivious to all of it - or at least, thanks to "dazzle" has no memory of it - what a story you will have to tell him as he grows older. Still swinging the hammer left-handed - and pulling heartstrings with his right. Little Jaybird is back!


Anonymous said...

It truly does "take a village" to help us through this journey called life and I believe the power of all these people and their thoughts and prayers helped get Jay to where he is today - we are all so thankful and so blessed! Love, AJ

Anonymous said...

Wow. Thank you so much for writing this blog and for allowing us to take part in and witness this story. It's been a blessing.
Continuing to pray for all of you,
will turbyfill

blair said...

I, too, am at a loss for words. Thank you for the post and THANK GOD for miracles.


Brandi said...

That picture of Jay with the hammer would have been wicked cute anyway, but now it has all kinds of layers of precious wrapped around it. Praise the Lord for all his work to make that lovely picture possible!

Derek Foster said...

Brandi, you have been in Boston too long. You just used wicked as an adverb. Can you at least drop in a y'all just to prove you ain't lost all your raisin'?

Brandi said...

Derek, I "might could" oblige! I sure ain't leavin' my kinfolk behind, I just like mixin it up, y'all!

Anonymous said...

You don't know me and we will probably never meet. I found your blog through a friend .I prayed for your son, as I am sure many many others did. Your story brought tears to my eyes and joy to my heart to know God did do a miracle! I hug my 2 yr old son a little tighter after I think of you and your family! I thank God for you and ask God to continue to bless your family!