Friday, March 12, 2010

And Away We Go...

We knew this day was coming. We've known for a while. We've even chatted about it--casually. "Oh, yes," we'd say. "McKay's cardiologist is looking into the best surgeon for his Fontan. We'll likely be headed out of town for at least part of the summer." We said it like no big deal, could- you-please-get-some-milk-at-the-store kind of talk. Today, what we'd been treating as a far-off likelihood became a bit more real.

When we sat down in the exam room at the cardiology clinic today we reviewed our list of questions with each other. Yes, make sure and ask about that. Please don't let me forget to mention this. Then our petite and powerful cardio angel came in the room and started with the what's what. We shut our mouths and opened our ears.

McKay's echo from January looks fine. Heart function is good. Valves look great. But there were some concerns with his bubble test. Bubble test? Did I know he had one of those? Do I know what that is? Apparently while McKay was sedated for the echo, they injected a vein in his arm with a saline solution that they then watched circulate all the way back to his heart and lungs.

The saline tends to carry tiny bubbles, hence the test's deceptively innocent name. In a good bubble test all of the bubbles end up back in the lungs because that is what the Glenn procedure (McKay's second surgery) is designed to do--return all of the blood from the body directly into the lungs to be reoxygenated. However, in McKay's case a good portion of the bubbles also landed in McKay's heart. Not good.

Not so good because it means that "blue blood" or blood that is oxygen poor and has not yet been reoxygenated is mixing heavily with "red blood" or blood that is oxygen rich because it has just been reoxygenated in the lungs and is now in the heart ready to be pumped out to the body. This mixing creates a diluted blood--blood that is not carrying all the oxygen it should--and that is what is being carried out to McKay's body.

In a sense he's like a car trying to run on watered-down gasoline. It'll run, but it will also hiccup and not perform to its full potential. The likely culprit in this unwanted mix up is another pesky collateral vein--just like the one he underwent a heart catheter to coil off last summer. The cardiologist suspects that this time the vein has formed at or near where his superior vena cava and pulmonary artery were grafted together during the Glenn. Again, the body instinctively knows that blue blood, in a normal anatomy, should go to the heart first, then to the lungs and then back to the heart to be redistributed to the body. But the surgeries McKay has undergone are all in an effort to avoid blue blood returning to the heart at all because McKay's half a heart does not have the anatomy to separate the used blood from the refueled. Oy.

So we're headed to the cath lab again. The docs will expertly navigate instruments too small to imagine, into places too scary to think about, to resolve problems I can barely wrap my brain around. They will do it. And they will do it well. That's the first item of business.

Secondly, we were presented with several names and hospitals that our cardiologist considers candidates for Mac's Fontan. The consensus is that McKay will benefit most from an extra-cardiac fontan rather than the lateral tunnel option. This means that they will graft a conduit from the inferior vena cava to his pulmonary artery around his heart, not through it.

Our best, most experienced option for this procedure is a Dr. Spray at the Children's Hospital of Philadelphia (CHOP). Soon the images from McKay's latest echo and the results of the cath he'll undergo in the next few weeks will be zipped across country to this man who will then evaluate the info and schedule our sweet babe for his first cross-country jaunt. He may decide to have Mac fly out for a pre-Fontan cath at CHOP or he may decide the info gathered at Primary's is enough to go on to prepare for the operation. We'll have to wait and see. One trip or two, we'll do whatever it takes to get McKay into the best hands available.

Finally, it was confirmed today that Mr. Mac did indeed receive a generous dose of gentamicin almost continuously during his first 48 hours on the planet. This may be the cause of his hearing woes. We learned today that gentamicin is a vestibulotoxin, and can cause permanent damage to the inner ear if taken at high doses or for prolonged periods of time. But there are also well documented cases in which gentamicin completely destroyed the vestibular apparatus of the ear after three to five days. Mac was exposed for a shorter period of time, so he's in a bit of a gray area. Count on our guy to find the most remote odds and capitalize. Someday that one-in-a-million spirit will serve him well. Right now? Not so much. We're still holding out hope that his next hearing evaluation, scheduled for the 23rd of this month, will bear some good news. At this point, I'm just hoping to get him help and soon so he can begin to tell me what he needs.

On a lighter note, Mac is a complete ray of sunshine. He's begun to do his version of the actions to "Itsy Bitsy Spider" and "Patty Cake." Do you think I can count that as having taught him two of the three signs I was asked to teach him this month? Because he seems slightly less than not at all interested in learning the signs for milk, mom, and more. He's a stubborn one.

Most of all he loves having his brothers dance and run and act like banshees around him. In fact he gets so excited he shakes. It makes me laugh out loud--really. It also makes me realize how full of life he is. And it's a life we're more than happy to help him keep fighting to live. Many thanks and much love for your endless care and concern. Your love and support help us so much on the many days that have seemed more overcast than sunny for us lately. We know better weather is on the way and after we make our way through a few well-forecast storms, life will seem all the more warm and wonderful. xoxo.

15 comments:

Melissa said...

Man! That is some crazy news! Hopefully you find somewhere you are comfortable going "when the time comes". Keep us in the loop!

Marshelle said...

What a lot to take in at one appointment. You and your family are constantly in my thoughts and prayers. I'll be hoping for days full of sunshine with temperatures in the high McKay's! Hang in there!

Jenny said...

Oh, Mindi. I do think of you all the time and that darling little guy of yours. I hope you really can feel the love and prayers of all of your friends. I am here for you.

kto1s said...

We are pulling for McKay and all of you, always. Love you!!

wylie said...

That is a lot, I'm so glad you keep posting so we know. Our family prays for McKay, even the kids. We are anxious to see what the 23rd brings. We love you all.

Tammy said...

I came across your blog kind of by accident-but maybe not. I read about McKay having difficulty hearing and you teaching him some signs. I don't know if you have heard about Signing Time, but I have used it with my children and it is a fun, easy way to learn the signs and it a video the whole family can watch and learn. I think you can get these at the library or you can get them at www.signingtime.com It helped with commuication barriers and frutstration with not knowing what my young child needed. Best Wishes.

Troy Vaerten said...

I pray that everything goes well. Our daughter just went through the extracardiac fontan and is now recovering at U of M.
Best wishes.

Patti said...

As always, know of our love for you and your family. Hugs.

Sabrina said...

Mindi, now you're teaching me some things...Bubble test? my goodness, I suppose the test itself conjures visions of kids, running after floating bubbles.

I wonder if Lu had that medicine...the one that causes the hearing loss...

I really can see you speaking-publically-on this stuff one day. wow oh wow it takes a medical degree and yet you seem to be able to rattle it right off!

well, of continued prayers...CHOP is a great place...I'm happy for you guys...you are getting the best care. Period.

hugs and kisses, and that shaking image made me laugh too! I can't wait to meet him.

love,
Sabrina

Christina said...

I have heard great things about CHOP. Thanks for keeping us posted so we can be praying for your sweet family. Let us know if there is anything we can do for you!

Hugs & Prayers,
Christina
Jacob's Momma

jaci said...

I mean really you could go get your degree today! You are amazing! We will be thinking and praying for you and miracle McKay! Remember I'm always here if you need anything at all! I love you!
Jaci

GG said...

Best of wishes to a very sweet family...keep us posted. We send all our prayers and love.

Ryan and Hilary said...

I just love you. Big adventures are looming and we will be praying for you and your little man. Watch for the Lords tender mercies. Sending our love and prayers.

Anonymous said...

Mindy - I don't know you or McKay but be assured that Dr. Spray simply "walks on water" Trust me. He saved my son's life.

Wishing you the best throughout this journey.

Kristi said...

Ah Mindi, I'm sitting here wishing I could somehow rescue you and your family from all of this. You have strength beyond measure...much more so than I. Though the months ahead are scary and uncertain, I know no one more capable of navigating it. Love you, mindi. You and that happy baby of yours are in my prayers.