Sunday, December 13, 2009

Timeline

Any time you walk into a children’s hospital with your child, you know your life has the distinct possibility of being forever changed. Whether it’s for an accident, a chronic disease, or a mystery illness yet to be diagnosed, the hallways of those institutions of healing and hope can be a long walk.

I have been dreading our regular three-month cardiology checkup for a good six weeks now. I just had a bad feeling about it. It wasn’t a bad feeling like something was extra-wrong with my babe, just a general annoyance with having to revisit his reality in regular intervals.

I remember the moment we were made aware of McKay’s condition I started an insatiable quest for information, names, connections, explanations, resources and on and on and on. But over the last three months, that part of me has shut down. Yes, I still keep my eyes and ears open, but something has changed and I have turned inward on my babe. As much as I want to give him the best options, the best resources, the best treatment available, I also feel a need to protect him from becoming ‘the sick kid.’ You know the one people stare at but don’t talk to, touch or interact with; the one people either feel obligated to ask about or avoid.

When people ask me about McKay I want to answer with a report about milestones centered on mobility, appetite, speech and all other things oh-so-15-months old. I do not want to assume the interested party expects me to lead with an update on our search for a surgeon, the latest cardiology report, prognosis, or plans. So I don’t. I say he’s fine. I call him a stinker when he’s a stinker. I’ve been more normal with him and it feels better.

Call it denial. Call it going numb. But I needed to change the focus. And going back into visit the cardiologist meant the pretending was over.

The usual weight, height and sat measurements were taken. 27 pounds. 29 inches. 79 on ¼ liter of oxygen. 68 on his own. Growth exceptional, saturations miserable. It was the same story we’ve been living off and on for the last year.

So the visit mostly centered on what’s next. And what’s next is 8-9 more months of oxygen as we wait for him to either take a serious turn south and require some unscheduled intervention or hold steady as tests are run and visits are made to a facility with a surgeon ready to tackle his case. While Primary Children’s touts a respected roster of cardiothoracic surgeons, they are still short a senior surgeon. Word is that the surgeons have met with the cardiologists on some of the more complicated cases such as McKay’s and they have asked that, for now, all Fontan operations complicated with dextrocardia be referred out.

Basically, being referred out means that we get to go shopping for a surgeon. When our card asked if we had preference for hospital, location or surgeon, I just said, “Yes, we prefer you find us the best surgeon.” I asked her to find someone who had done the Fontan in at least half a dozen dextrocardic kids with a good outcome. She said she thinks our best bet may be Children’s Hospital of Philadelphia (CHOP). But maybe Michigan. Or Stanford. Like I said, it’s time to shop.

For now, 2010 is shaping up a little something like this:

March 2010: sedated echocardiogram scheduled at Primary’s to do a full study of McKay’s heart and prepare a study to send out for review to candidate hospitals. (Apparently, many hospitals compete for complicated cases—that may play in our favor as far as getting access to senior surgeons.)

May/June 2010: Make initial visit to selected facility for work ups and pre-surgery heart cath.

July/August 2010: Fontan. Take our show on the road for anywhere between 2 weeks to who knows how long to get Mac re-plumbed and well enough to travel home again. The other monkeys may come for all or some of it depending on the location. I would love to make this some sort of “good” summer memory for them instead of “the summer when mom and dad left us.” I’m going to have to do some thinking on how to make that happen.

So that’s the latest. A lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been. In the meantime we’re just trying to keep Mac as happy and as untangled as possible. He is freight train on a short track and it’s a frustrating journey to watch. I spend most of my day chasing him around trying to give him enough space and slack to be himself. He’s a special little kiddo. I’m glad he’s mine. We will do right by him.

11 comments:

The Simmons Family said...

You have finally reached the point that I think we all get to where the heart stuff is normal and McKay is not defined by it. You have to create a normal life for him and the heart stuff become secondary. Even with the oxygen, I forget that Owen is even sick a lot of the time. We have to live in the moment and not for the next year. 2010 will be crazy, for both of us it sounds! :) Stanford has the Amazing Dr. Hanley as their cheif cardiothorasic surgeon... check him out!

Enjoy the holidays with your little bubs AND his 50feet of oxygen!

Lisanne said...

McKay is such a cutie! He is so lucky to have you. I hope all works out and you are able to find answers and a doctor. Enjoy the Holidays!!
lisanne

Staci said...

You are doing all of the right things for your sweet boy. You still have a daunting journey, but I am sure you will make the best choices for McKay (he wouldn't still be here if you hadn't already). Please know how all of us "heart mom's" are supporting you! And most of all- ENJOY THIS SPECIAL TIME OF YEAR with your family.

Staci (angel Bridger's mom)

Patti said...

Thanks for keeping us posted. We are very interested in all that is happening with you and your little angel and your family. We keep you in our prayers on a regular basis. Much love to you.

Jenny said...

So, can McKay have playdates? I don't really know what his quarantined status covers but Mason could really use some lessons on sharing! I would love to bring him over when it is safe for McKay and let the two get more acquainted! Hang in there Mindi. In a year where we wonder if we can commit to comp baseball with the two older boys you wonder which town will host a life saving procedure for your little Mac. You sure do put things in perspective for me. Even though I can never understand your normal, I try and I want you to know how amazing I think you are!

Kimberly said...

Mindi,
Your posts often leave me with a lump in my throat and tears in my eyes. Thank you for sharing your tender experiences and inspiring the rest of us.

Kyle and Alli said...

Mindi,

With so many uncertainties, I am still amazed at how you can try to make this positive for your family...creating a vacation centered on the Fontan will surely create all kinds of new stresses, yet I can see how the Three Musketeers theme is more than just a Halloween costume for your family. All for one and one for all right? We are in the same boat awaiting a senior surgeon at Primary's, but we do have the advantage of more time. Good luck in all of the months of research and travel that are coming up!

The Smith's said...

It doesn't sound like Seattle Children's was optioned to you ... but it may be one you want to check out. Dr. Cohen is the chief cardio-thoracic surgeon and we couldn't be more pleased with him and the staff in Seattle. (Not that I'm biased and not that I'd love to meet you! =)

The waiting is just so stretching. We just learned on Friday our card. wants to put Luke's Fontan off until the summer of 2011. I think the most appropriate phrase for this heart journey is finding contentment in uncertainty. You do that so gracefully!

Heart hugs to you,

Jesse

Grandma Sheri said...

Remember the children song "I will go, I will do?" Well, you will and we will. Until then just breathe.

Meredith said...

I got chills just reading the acronym CHOP. I spent plenty of hours there with Madeleine running tests etc. trying to get her allergies ironed out. Obviously a different set of doctors for a different set of reasons, but all good experiences. If you end up going there, I may just tag along!

Summer said...

Thanks for such an honest post.....very heart felt! I also wish, more than I can express, that Primarys had a senior surgeon....we most likely will have to relocate for several months because of this!!! And to make you feel better...Mason lately has been up to 1 1/2+ liters of O2 to get him to 78....thanks to his fevers and coughs! Yuck!

I know there are other great facilities out there because as you know that has been my research since September. I was extremely impressed with Stanford during our visit. CHOP I know also is very very qualified! Good Luck....and may the Lord guide you to know McKay's path.

Mason's Mommy