Ups and Downs

After I wrote my last post we had a little dip in our forward progress but that's to be expected.

When he sat up there was too much drainage in his chest tubes, so they will need to stay in for a little while.  However, that was not enough to keep him in ICU and was moved to a regular floor.

He is now sharing a room with another boy but he has the window side so that is nice.  Chris said they actually let them sleep last night so that was great too.

He had two big challenges yesterday.

One was learning how to pee again, apparently after having a catheter in its hard to get started again.  But he worked really hard and over came that obstacle late last night.

Second, is to try to keep anything down.  Each time they tried to give him oral meds he puked them back up.  Eventually he was able to take one crushed in a spoon of ice cream but he's still really afraid to eat anything today.  I understand his fear but eating something is the only way to start easing his stomach.  It hasn't had food in over four days.

That's where we stand today.  I'm on my way over in a few minutes to switch with Chris.

 

Chris FB Post:

Sep 7, 2012, 3:50 PM

Jared has been upgraded and is out of ICU. He still has his chest tubes in. But those will come out soon enough. He's in a shared room so please pray his roommate is great!! Pray for Jared! It is working

Sep 7, 2012, 10:24 PM

Jared peed!!!!! Whew. After many, many failed attempts at peeing in a bottle laying in the bed and then sitting or standing next to the bed, I suggested to Jared that he try to sit on the toilet. He agreed and off he went with the help of his nurse and me. It was quite an accomplishment as he had to be unhooked and then have his chest tubes dragged behind him. Well, it worked, thankfully. His bladder was full and if he could not go, a catheter would have to be used. It was a very painful thing for him to move around like that. He is so strong.
Now another check is marked on his progress chart. They are targeting tomorrow for removal of his chest tubes.
Oh, and he has finally been able to hold down some food and liquids.
Keep praying, it is working.

Sep 8, 2012, 10:16 PM

Jared is feeling better and better. He is up an moving about, sitting and walking more. One chest tube was removed at 5pm today and another should come out tomorrow. A third that drains fluid from around the heart will be longer. The other two are for each lung.
Jared is continually amazing me. He did not even flinch when it was pulled out. He was given meds to help, but it was pulled out right before his eyes. It would be extremely hard for anyone to not flinch. He is very brave boy.
On a sad note, Auntie Sue had to say goodbye, as her flight leaves early in the morning. But, a surprise visitor flew in today for the rest of our stay in Boston - Grandma Elaine! Jared was very excited and it will be great to have her here to help out.
The kids were once again fantastic today. Lance and Titus spent a long time in Jared's bed playing with Legos and other toys. All my kids continue to impress me. Makes me feel I have done something right.
God is great and is at work here. Keep praying, it is working. Thank you all.

Sep 9, 2012, 8:38 PM

A day of rest for the most part today and tomorrow. The two remaining chest tubes are still draining too much to be removed. This is normal considering the amount of work that was done. The next big step is trying to have a bowel movement. It's a weird thing to pray for, but this whole experience has been exceptionally abnormal. Thank you all for praying and your support.

 

Times are Changing - In a good way!

The last few days have been a whirl wind. We are not sure how it got to be Friday; it's been rather a blur.  I have an hour to eat lunch before we need to get back to the hospital so I'll do a quick update.

Things are going INCREDIBLY well!

Look at this picture from yesterday, shortly after they took him off the paralitic.

My beautiful boy actually smiled for the picture!  He is so courageous and has such an awesome attitude!

When we met with Dr. Del Nido after surgery he expected Jared to be in ICU AT LEAST a week, but the timing would be up to Jared.  

Well, Jared has told us he wants to come home, and is acting accordingly  Did you notice I used the words "told us"!  He was extubated at about 2:30am this morning.  Chris spent the night in the hospital to make sure he was there when they removed the tube.  Since then things have been moving fast and furious.

Today, the attending doctor said he was doing "fabulous", much better than anyone expected.  As of right now, he has all but one IV out; is sitting up in a chair and watching a Curious George DVD.  Depending on how much blood drains out while he's sitting up, even his chest tubes may be removed today.  The chest tubes are causing him the most discomfort so that would be a welcome change. 

If he continues to do well, he will be moved off the ICU floor tonight.

Thank you for your continuing prayers, they are doing miracles!

Extended Stay

Jared is out of surgery but things didn't go quite like we hoped.

First issue was that the leaflet was really stuck down, it took a lot of time to disconnect all the tendrils in order to do the "Cone Procedure" to correct the tricuspid valve.  After they completed this and plugged the right to left holes/shunting, they took him off the heart lung machine.  They then did an ECHO and blood work to see how the right side of his heart was handling the change.

His heart muscle was thin and weak.  We didn't realize how extreme his right to left shunting was; apparently only about 38% of his blood was actually going through the right side of his heart to his lungs before surgery.  This explained why he was so "blue".  With the corrections above there was now 100% of his blood flowing through the right side and it was more than his heart/body could handle so they had to go back in.

They put him back on the heart/lung machine and this time he needed two pints of blood (one of dad's and some kind stranger).  The procedure they performed is called the Glenn.  It re-routes all the blood from the upper half of the body directly into the lungs, by-passing the heart.  It sounds terrible but I'm told it is a very common procedure.  

He is tolerating now about 50% of his blood (a 15% increase) flowing through the right side of his heart.  However, it will now take longer to heal.  His heart has been traumatized and is now being expected to work harder, its a double whammy.  It will take time to heal and for the muscle to grow in strength. The upper half of his body is slowly adapting to the change in pressure also.

They have him in a drug induced comma for now, and is being fully assisted.  He will be like this for three to four days and then they will slowly, ever so slowly, start to wake him up.  He will be in the ICU at least a week.  In the hospital at least another week and we will need to be in Boston at least another week after that.  Therefore, we will be here about two weeks longer than we thought, but first he has to get out of ICU.  We are just taking baby steps forward, one day at a time, dealing with whatever comes our way next.  

He is far from being out of the woods yet.  I read to him this morning, massaged his feet and cried a bit.  Chris and Sue are headed over for a bit and I'm going to take the rest to the hospital playground we found, looks like the rain has stopped for the day.  

Thank you for all your prayers, forgive me for not responding, I'm in survival mode.  Please keep the prayers coming and I'll update when there are any major changes.

Chris FB Post:

Sep 5, 2012, 2:44 PM

Jared is doing well. He passed the 12 hour point after surgery with no issues, which is good news. An IV was removed from his heart which was monitoring pressure and his ventilator was reduced a bit. His skin color is fantastic. Keep praying, it is working.

Sep 6, 2012, 12:01 AM

My sister and I just finished visiting Jared. He's holding steady, which is a very good thing. If all stays the same, they will start to adjust his meds to allow him to wake up a bit Thursday. The transition from a comatose state to fully awake must be done over time to reduce the stress on his body. This is still great news.
Please keep praying. Thank you all.

Sep 6, 2012, 12:51 PM

Jared is doing great. They stopped the paralytic at 11am this morning. They said he would start moving around in 1-3 hours, but not be fully awake because he is still heavily sedated. Tina and I decided to go and eat some lunch and maybe do some laundry. Tina just called the nurse and of course he actually woke up shortly after we left and asked for water. Since Jared is still intubated, I guess the nurses are great at figuring out what kids are asking for. He went right back to sleep after asking. This is fantastic news. Jared is a strong kid. The nurse is contacting the doctors and they may move up the extubation. Keep praying!

Surgery Has Begun

Jared last ate at 10:30pm last night.  Surgery was suppose to start at 11am but it was Tuesday so they moved it to Noon.  Then for reasons we didn't want to know, things didn't start till 4pm.  During our long wait we watched one of the "Ice Age" movies (TWICE!), but Jared laughed hysterically which helped us have some good laughs too.  Then we colored RedSox pages with Jared, played with toys and snuck next door to watch a Magic Show; in which my beautiful thespian participated.  

 

After the show Jared made a friend and played "Galaga" for a while, then they finally came and got us.

Now we will be praying and waiting some more.

I will keep updating this post as we get updates.

4:00pm  Jared is sedated by IV Chris and Tina's by his side. He was very brave.  We cried.
5:00pm  First Incision made on schedule
6:30pm  Put on heart by-pass machine
7:30pm  Having trouble removing leaflet because it's so "sticky". Therefore, procedure is going slow but forward.  Most likely two to three more hours of surgery.
8:30pm  (Chris) Jared's surgery is taking longer than expected.  The "tendrils" that connect the valves to the heart wall are tough and sticky and are taking longer than thought to cut thru.  All is going well and he has had no blood products given which is a very good thing.
9:30pm  Still working on tricuspid valve.  It has caused Dr. Del Nido some trouble.  They have completed the standard ablasions for Ebstein patients.  Surgery is not going as smooth as we hoped and prayed.  Please keep praying for the surgery team and Jared, at least another two hours.
10:09pm (Chris) Surgeon is running blood thru the heart adn doing an echo to see if the cone is working.  If so, he is done.  Keep praying.
11:37 pm (Chris) Surgeon is pleased with the results of the tests. He is working his way back out, as the nurse put it. We should be meeting with the surgeon in about an hour. Praise God that everything has worked out. Keep praying, Jared has a long way to go. Thank you all for your support and prayers.
11:52 pm (Chris) Some labwork came back that concerned the surgeon. With the condition Jared's heart was in, doing what was called a Glenn procedure was a possibility. Well, after seeing everything, the surgeon decided that Jared's heart cannot handle the new pressures put upon it. The glenn procedure will help to reduce this pressure. He is going to have to go back in, put Jared back onto the heart bypass, and proceed. We are looking at a few more hours. Keep praying, this part of our boy's journey is not yet complete.
12:00 pm  Took Jared of heart/lung machine.  Thought they were done but blood work came back poor.  They are going back in to do the Glen procedure ie. re-route top half of body directly to the lungs, cone can't handle the full pressure. Another hour or more.
12:30pm  Surgery is complete.  They are closing up and we are heading over to meet with Dr. Del Nido.
1:28 am (Chris) Jared is out of surgery. The Glenn procedure and all repairs were successful. His long term prognosis is excellent. However, the next 2-3 days are critical to see how is heart responds to all the new stresses put upon it. Your continued prayers are needed. Thank you all for prayers and support. It also looks like we will be in Boston for a further 3+ weeks. We miss being home and we have a long road ahead.
3:17 am (Chris) We just left Jared. He's in good hands. He's having some bleeding from the nose/mouth. Please pray for that to stop. He's going to be kept sedated for the next 2-3 days to allow him to rest and heal from the long surgery. We are going to try to sleep some. Thank you all.

Too Much of a good Thing

We have been trying to pump Jared with as much calories a possible today and since he can't eat after midnight we were trying to have fun letting everyone stay up late, to maximize his calorie consumption.  

Unfortunately, it all became too much a little bit ago, he gagged and he threw everything up.  Bummer.  Bother. Ugh. Foul Filth.....choose your irritated saying.

Tomorrow is D-Day and I'm not ready.  We have kept on the good game face but its a day I never wanted to come.  I kept hoping/praying the last seven years for divine intervention.  I realize that having the opportunity for Jared to have this procedure IS divine intervention but I was hoping for the sudden miraculous kind Jesus did in the bible.  Don't get me wrong, there is no way to express how thankful I am we are here, I just can't explain how terrified I am right now either.  

I understand that God is in control and I should not worry cognitively but my emotions aren't listening.

We had a picnic at the Public Gardens today but I just can't get past my feeling of dread about tomorrow to share about that nice adventure right now. 

Hardest part is it's not a matter of just making it through tomorrow, we'll be on high alert for at least a week.  At the rate my hair is falling out from the stress I might be bald at the end of the week but I hear wigs are easier anyway.

Please pray for Jared starting at 11am tomorrow.  I'll post again as soon as he's safely out of surgery.

Fenway Times Two!

The last thing on the boys bucket list of Boston was of course to tour Fenway Stadium, home to the Boston Red Sox.  The stadium is about 3/4 of a mile from our room, so the easiest thing to do was to walk.  We headed out after lunch and Amber's nap.  We arrived at the ticket window about 1:30 only to find out the next open tour wasn't till 5pm.  Ooops!  In hind site we realized Chris and I should have bought tickets when we were out shopping.  So we went to the sovereign store, bought a few things and walked back to the hotel. 

Second time, we thought we had timed things perfectly arriving at 4:55 pm, we'd seen they spent some time in the store watching a movie before leaving to the stadium, so we should have been plenty early.  However as we arrived we saw large group of people walking off and they were locking up the store.  We asked the guy at the store if that was the 5pm tour and he said yes it always starts early because he has to close the store.  Once again, no one had felt the need to tell us at the ticket window and the tickets clearly said 5:00pm that the 5pm tour really began at 4:45pm.  Ugh! 

Thankfully, we'd seen the show when shopping earlier and the boys didn't really care about that and it was better in the end that we missed it, so we could keep little miss moving.

When we entered the stadium for the tour the guides clearly saw we had a stroller but once again no one felt the need to tell Chris he'd have to carry the stoller up and down lots of stairs, nor did they attempt to help, thankfully Chris is a big strong guy.  We just had to laugh, Bostonians I guess just either assume you know everything or just prefer to keep information that may be helpful to you to themselves.

That said, you should have seen the look on the boys faces as we entered the stadium.  They were all smiles.  Their little league team has been called the Red Sox for the last three seasons and they were thrilled to see in the home of the "Big Green Monster" or "Mahnsta" as our guide called it.

We got to tour all around, the visiting locker room, dug out, the press box, behind home plate, and sit in the Green Monster seats.  Our guide was full of entertaining stories about he history and the people behind Fenway.  It was a great tour!  My favorite part was getting this awesome family picture!

Forced to Drive in Boston

The people of Boston are friendly but not forth coming with information.  You have to really drag it out of them and of course know what questions to ask, which is of course a bigger issue with the hospital than daily life. 

Yesterday was another perfect example.  I called Saturday to find out when our Whole Foods delivery was going to arrive only to find out they don't deliver on weekends; she said she guessed she should have told me that (Oyeevey). 

We didn't have enough food to make it two more days so Chris and I ventured to make the 1.3 mile car trip with my trusty shopping buddy Titus.  The rest of the crew stayed with Auntie Susie.  We hoped since it was Sunday morning driving would be easier.  However, when I went to the front desk to get our parking validated she warned me today was move in day for the 12+ colleges in a stones throw of where we are, let the adventure begin!

We drove east today and amazingly found a street with lane markers.  Okay that's a good sign.  We managed to avoid the ramps that took us underground and onto the highway.  However, what we didn't know is that roads have up to five names depending on what streets they are between and sometimes they only display the name to the right or left forgeting to mention the other, thus we of course missed our first turn.  That's when I decided to ignore names and navigate by following the blue dot on our phone map program and just tell Chris which way to turn.  Thankfully that was the only turn we missed and we were able to make a U-Turn.  We parked in the spiral parking garage above Whole Foods and were quite proud of ourselves.  We joked as we walked in that we were back to the mothership.  Our joviality was short lived.  The one thing we really needed was baby food for Amber and of course since this is in the middle of college central they DIDN'T HAVE ANY!  Ugh! 

We took a big breath, paid $5 for parking (you have to pay before returning to your car) and checked how to get to the other Whole Foods by Cambridge.  An advantage of being in a big city is there was more than one.  It was a going to be another 2 mile adventure, this time over the river but it had to be done, baby could not go without food.

This time I navigated by the blue dot alone, we weaved and dodged our way and made it without incident. Amazingly it actually had a real parking lot, a true novelty in Boston.  This Whole Foods was bigger than our one at home and we found everything we needed and more.  The key thing we had to keep reminding ourselves was that we had to carry everything from the parking garage, through the mall and up to our room, so not to buy too much.  This store was designed for winter.  As you entered the store you went up escalator and when you exited you drove under the store to pick up your groceries that came down a conveyor belt in buckets to load in your waiting car.  Titus was fascinated with this process of course.

Now we had to find a way back to our room.  With all the one ways it was not a simple as reversing course.  We learned to stay on the Orange/bigger streets after making one wrong turn (that was thankfully recoverable) and made it back to the room.  When we got there the parking garage was "FULL" but since we were staying at the Best Western we were let in and managed to find a spot, and brought the groceries up in one trip.  Success!

As we drove around Boston today we realized we would acclemate to the strange roads and adapt to the big city in a few weeks.  However, we would probably still avoid driving as much a possible, which seems to be what most people we've met do.

Its like our room here at the Best Western.  When we first arrived I broke into tears.  The room is very, very, old has a smell of feet, and the windows open to views of the buildings next door (making it like a cell). The "fully equiped kitchen" didn't include plates, spoons or most other basics, it did have someone's old sugar in a container which made the lack of a dishwasher tell us none of the dishes were safe to use till we scrubbed them. The head board in the bedroom broke at some point and rather than fix it they just put it in the closet.   You have to rush to turn off the window air conditioners in the middle of the night when the trash men come to avoid sucking in all the exhaust fumes.  Oh, and there are exposed cables and cords all over, great with little Amber around.

I say all this not to rant but to say that we've adapted.  We bought soap, scubbers and plastic plates, bowls and silverware.  We've learned how to cook only things we can boil or microwave.  The refigerator is big enough for the volume of food the boys eat.  The passthrough window from kitchen to living area is useful.  The main room is very big and with some furniture rearranging gives everyone a lot of room to move and play.  The DVD player and Water Filter System we brought with us both connected without problem.  The solid wood doors allow Amber to take naps and us to the use the bathroom/shower without disturbing anyone sleeping.  We've never heard our neighbors and thankfully we have none below us so we don't have to worry about bothering them. 

Most importantly our bulding is next door to the hospital.  We are thankful we don't have to commute by car or train to get to the hospital, it will be an even greater blessing when Jared is admitted tomorrow.  We hope to stay here as long as Jared is in the hospital.  Right now we'll have to move after the 14th but if all goes well he should be out of the hospital by then and we'll only have to commute to come to appointments.

It's not home but we've found a ways to make it work.  Chris and I continue to be impressed at how great the boys attitudes have been this whole journey.  Lance started emailing his friend Matthew and Titus askes when we are leaving but that's about it.  Though the logistics may have been easier if we had not all come, the mental health of everyone would have been worse.  Like Chris said at the being we are always better together and I am so thankful we are able to be.  Having Auntie Susie hear has been a huge blessing as well, I already dread her leaving next Sunday but we will work that out together again too.

Later I'll post what we did the rest of the day :-)

Finally a Day of Fun in Boston!

Jared wanted to do three things today: ride a train/subway, visit the aquarium and tour the U.S.S. Constitution. 

We considered buying Jared a medical mask but worried about it restricting his oxygen further.  Instead Chris had a serious talk with him about keeping everyone and everything at arms length and to never touch his face.  He needs to stay healthy or his surgery will be post-poned.  At the same time if we stayed in our room for three days we might all go crazy and no one would be in the right frame of mind for surgery on Tuesday, its a delicate balance.

We started off early and bought a 1Day pass for the train/subway. I was thrilled to see that it appeared clean and was pretty empty of passengers.  The boys enjoyed the ride over and under the city and it placed us right at the Aquarium in the end. 

Item number 1 check!

This part of Boston is beautiful; the air much cleaner and the area much more child friendly.

We were gifted a membership to the New England Aquarium and excited to use it.  We had a great time exploring the aquarium, they had a number of different animals I had never seen in captivity before; an egg veil, anaconda, electric eel (with meter) and a variety of other marine animals I can't remember the names of today.  Considering all the aquariums we've visited that's saying a lot.

Item number 2 check!

When the Aquarium started to get busy, Chris and I became uncomfortable.  Though we had never seen a single person who looked ill we didn't want to push our luck.  Everyone was getting tired so we thought we'd return to our room.  Then Jared lamented that he really wanted to see the USS Constitution.  So I went into problem solving mode.  It was a 1.7 mile walk, something no one was up for and no trains went that way....so I talked to a tour guide who told me our train passes included a ferry ride that took us directly from the Aquarium to the USS Constituion!  How exciting!  Boys talked about wanting to go on a boat ride but didn't think it possible.

With my virtigo prone crew I made sure they stood outside on the bow and Chris bought a coke to share with Lance (apparently caffine can mitigate the triggers of virtigo) and off we went.  The bay was incredible calm and everyone had a blast.  We saw cruise ships, tug boats, fire boats, police boats, need buildings and city features.  I was just tickled it didn't cost anything extra.

The bonuses continued as we arrived at the Ferry Dock.  In addition to the USS Constitution there was a WWII Destroyer in dry dock open for tours too!  Jared said he liked the USS Casin Young Destroyer even better than the USS Constitution; I think because of all the different type of armaments.

We self toured the destroyer because they had a four foot height minimum and the mighty Titus therefore could not go.  However, we did take the 30 minute tour of the Constitution and I'm so glad we did.  It was free and the only way to get below deck.  I put Amber in the backpack so Chris could carry Titus if necessary but of course it was not.  We learned a lot about the 214 year old ship and its 33-0 record.  Jared had some good questions for our tour guide too.

Item #3 Check!

We then reversed course on the ferry and train back to our room.  It was nice to be tourists for a bit, to distract us from our worries about Tuesday and whatever follows.  The stress has been hard on everyone.  Poor Titus won't let Chris and I even go downstairs without him.  I worry when he'll need to stay with Auntie Susie on Tuesday, he's going to be a handful.  He came in this morning all worried Jared wasn't awake yet.  People don't give little kids enough credit for what they understand.

Update with Chris FB Posts:

Sep 1, 2012, 11:31 AM

at New England Aquarium 

Sep 1, 2012, 3:32 PM

at USS Constitution 

Sep 1, 2012, 9:10 PM

Another long day, but this time on our terms. Jared spent the night in auntie sue's room and they stayed up late watching football. After everyone woke up, we had a "normal" morning with everyone having their breakfasts try would have had back home. We then headed out to nearest train station (trolleys) and went to the aquarium. We had a nice time but left after lunch because it became quite crowded.
Boston harbor has a nice boardwalk, so we went there. Tina found out that a ferry went from the aquarium to the charleston naval yard, which is home to the USS Young and the USS Constitution. The Young is a WW II destroyer and the other is nicknamed "Old Ironsides" and was commissioned in the late 1790's. Both ships were impressive and better yet - free admission!
After we toured both ships, we took the ferry back to the aquarium area and then hopped on the trolleys to go back to our room.
The kids were once again great today. They are such troopers. It is exactly the kind of day we needed to enjoy what Boston harbor had to offer and have fun as a family. Tomorrow we plan to tour Fenway! Yippee!

Friday - MRI - 3D ECHO - Lame Picnic

Another semi-long day at the hospital.  I'll let Chris explain.

Jared, Sue, and I (Chris) were at the hospital at 7am for his MRI, which did not start until 8:30. He did fantastic. We were worried (as was Jared) that he would need to be sedated and intubated. He managed to lay still (mostly) for the hour+ he was inside the doughnut. His only issue was giggling too much during the Ice Age movie. That squirrel is very funny. They put goggles and a headset on him to allow him to watch a movie. We are so proud of Jared and his resolve. Nothing with metal was allowed inside the room, so Chris could not take any pictures. Chris, however, was allowed inside the room and entertained himself with reading old magazines and shivering.

Afterward, the doctors wanted another echo (this time in 3D), so their departure was delayed. They captured some fantastic images of his heart, which will go a long way in helping them prepare for the surgery.

They all arrived back at our room at lunchtime. We grabbed some subway sandwiches and headed out to a local park, which did not have picnic tables. Boston has a large network of commuter trains and the kids were most excited that we sat next to a station. One thing this area does not have is outdoor play areas which makes things a bit difficult having active kids. It's just another hurdle to overcome and we will find a solution - somehow....

This weekend, we plan on touring the aquarium, old Ironsides, Fenway park, and maybe the freedom trail.

Hopefully it will be a nice weekend that will recharge everyone after a very long week. Keep praying, it is working. Thank you everyone. The true adventure begins Tuesday at high noon.

- Chris

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.