A Day in the Life of Max and Co.: 06/2013

So first things first....I know I owe a lot of you an explanation of last week's "fire drill" but I have been so burned out and running on empty I just never got it together long enough to sit down and blog.

Very, very long story short after seeing our cardiologist last week it was decided that we needed to do some further testing to get a better view of Max's entire aorta, not just the small piece that an echo cardiogram reveals. The most desirable test would be to do a cardiac MRA/MRI but those take months to schedule and there was no place to "shoe-horn" Max into the schedule so it was decided that we would do a CAT scan with contrast. That's where the real fun started. We went to Radiology on our way to another doctor's appointment where they were kind enough to fit Max in immediately. Once done we were on our way to Hematology which was meant to be our last appointment of the day. I was no sooner in the exam room with Max and Michele when my phone (actually both of them) started ringing and beeping as if it were the end of the world. The first message I received was from Libby, Cardiac Nurse Practitioner Extraordinaire, it went something like this...."don't worry but call me right away". These two phrases just don't go together, even on a good day. When I called Libby back it seemed the scan showed multiple blood clots on Max's portal vein or the vein that feeds the liver with it's blood supply. This was a two fold disaster in that it meant we could be incurring liver damage as well as the possibility of throwing a clot to his heart. Never a good thing but especially bad for a kiddo with an artificial heart valve. We were told to hightail it back to Radiology ASAP. I spoke to the Hematologist after sending Max out of the room so as not to scare him too badly. At this point I was violently shaking because I knew this was a new and very serious issue. Dr. Keefer, sent us straight over to the Hospital, calling over to let them know we were on our way all the while reading the scan himself. He looked pretty sober as he read the images on the computer screen. Now I was beside myself. When we got back to Radiology there were three high level techs and two or three doctors waiting for Max. It was surreal to see their attention and speed. I sent Max into the room with Michele because there was no way for me to hold it together and not scare Max. I sat in the waiting room with Libby and sobbed. I was given consent papers to admit Max to the Cardiac ICU for immanent procedures to rectify the blood clots. After what seemed an eternity one of doctor's emerged, his first phrase was, "It's good news". Libby and I screamed and hugged and were barely listening to the poor man by this point. So here's the short part of this long story. It seems that after multiple heart and abdomen surgeries Max's anatomy sucks (surprise!) and the contrast given during the scan never made itself all the way through his veins to illuminate the area around the liver. Evidently "black" on a scan means no blood flow which means clots. So strange anatomy coupled with a vein system that has created what they call "collateral veins" made by the body to compensate bad blood flow gave the impression of blood clots on the CAT scan. Via the ultrasound they performed with Doppler they could see that the flow was fine, "special" but fine. Thank God!

As you can imagine after all this excitment things got pretty boring, boring as in routine check ups! In the end, everyone was happy with Max's health status terming him stable (at least for now) and we can wait a year before we need to return. Obviously this could change on a dime but we'll take it and run! On our way out the door to the airport and on our way home. Hallelujah!!

If it's June it must be Baltimore! This is our annual fun-filled, all inclusive stay at the world renowned resort known as Johns Hopkins Children's Center. Although we are in the midst of our dawn to dusk ritual of doctors' visits, blood work, x-rays, ultrasounds, and Max's personal favorite CT scans (yes, I'm making that part up) we did find a few hours to visit Washington, D.C. last night. In the last few years we have tried, as much as possible, to throw in a few fun moments into these trips so that the kids won't be completely miserable.

I'm glad we did this yesterday because today ended up being quite scary and emotional, so much so that I am too drained to even write about it tonight. Suffice it to say it was another one of our famous "fire drills" and we thank God it all ended well. More info tomorrow.....