Poked, Proded, Ad Nauseum

Thursday was a super long day.  I touched on it briefly before but here's the details.  Nice part was everyone we met was so nice and they kept us moving; but it was a lot of moving....

• Fill out Insurance and paper work for the hospital (Jared and I headed out alone since all the other kids were still sleeping when we left at 7am)
• Go to Cardiology Pre-Op; fill out more paper
• Go get chest X-Ray
• Go back to Pre-Op
• Meet with Surgery Team  (This is the point where Chris and rest of our clan arrived at the hospital)
• Return to Pre-Op

• Go get Blood work (Jared and Chris who was doing the "Direct to Donor" so that if all goes well the only blood he'll get is his father's).  Lance went with Chris.  Titus and Amber came with Jared and I.
• Go back to Pre-Op
• Go to Cardiology Clinic for ECHO (Boys learned to like this room best because it had great toys and an awesome lady who engaged them in games). Bruce was really great and impressed with how well Jared did.  We explained he's had a couple a year for seven years he's used to it.  Miss Amber fell asleep at this point and slept on Daddy's shoulder for a while.
• Go meet with Anesthesiologist; more paper work.  She was super surprised that he didn't need to be sedated to have an IV put in, we explained he'd never complained in the past.  She thought that was great.  Less drugs in his system the better I always say, within reason of course.
• Go Back to Pre-Op
• Go meet with Surgeon Dr. Del Nido.  He was such a nice man and it was reassuring through out the day to hear his colleagues pause and say he's the best in the WORLD.  Frankly, it was rather humbling.  That we your average Joe are able to have him do the surgery.

• Go Back to Cardiology Clinic/Train Room to take a stress test.  This was another encouraging moment.  He got to do the test on a bicycle so at first I was in there having him pretend he was racing in the Tour then I ran out and switched with Chris when he faltered since Chris is better at such things.  The doctor doing the test was down right excited about how much Jared's life will be improved by the procedure.  Said he was the best 7 year old he'd ever had, once they stop his oxygen saturation from dropping he'll be unstoppable. 
• Go meet with Cardiology NP; more paper work and special bar of soap to wash him with night before the surgery that kills anything living on the surface of his skin.
• Go back to Pre-Op
• Go see if we could do MRI.  They said they were too full and felt he'd need to be sedated and intebated.  I wasn't thrilled about that but more what happened at the MRI today later.
• It was now 2:45 and we had a break till 3:15 to finally eat lunch.  Hospital has a nice cafeteria with a cool Rube Goldberg experiment running out front that everyone was fascinated with watching.

• Go back to Cardiology Clinic/Train Room (boys spent a lot of time here while we met with some of the folks alone) to meet with Dr. Marx, Jared's cardiologist in Boston.  Turns out he specializes in Ebstein Anomally, just like Dr. Del Nido and has written some research papers on the success of the "cone procedure" Dr. Del Nido will be performing on Jared (along with plugging the two holes that cause the shunting of oxygenated blood into his blood stream but currently serve as pressure valves).

Then it was 4:40 and we were finally done.  Done being an understatement, but we couldn't praise the kids enough on how well they had all braved the day.  Aunt Susie arrived (Yay!) shortly after we got back to our room; as did our order from Whole Foods.  I had been on and off the phone half the afternoon making and adjusting a grocery delivery; they were so accommodating.  Turns out if you order at least $100 delivery is free, and those who know how my clan eats know $100 is no problem. It was so nice to eat our normal fare for breakfast this morning!

Miss Amber is awake from her nap.  Chris, Jared and Susie should be back soon so I need to get back to organizing things in our temporary home.

FYI.  Our internet connection is very spotty, in fact it was down from noon yesterday till this morning.  So not only can we not communicate with email, it will be hit and miss when I can post but I'll do so when I can.

Update With Chris FB Posts:

 

A very long day once again. Tina and Jared left to be at the hospital at 7:30. The rest of the kids slept in a bit and were up and at the hospital at 8:30. X-rays, echo, stress test, blood draws, blood donation, and countless appointments with any/all doctors involved with his case made for a very long day. We are continued to be impressed by the people at the hospital. We are reassured that Jared will receive the best care. One of the doctors even said the surgeon (Dr del Nido) is the best in the world for this procedure. It's truely humbling to be a part of this. The doctor who gave the stress test was impressed by Jared's abilities and said several times how excited HE was at what this procedure would do for Jared. It is great to seen how each and every person we encounter truly cares about the people they are seeing.
Basically, if all goes according to plan Jared's heart will operate as close to a normal heart as possible.
The kids were once again great and the hospital has many things for the kids to play with and volunteers to play with them.
Please continue to pray for us. It is working. The long days have made the first part of the trip almost unbearable and we still have many weeks to go.