Run! Jared Run!

Two weeks after we returned from Boston, Jared had his first visit with our home cardiologist.  It was the standard "Dinner & A Movie" visit i.e. EKG, ECHO and Exam.  We had talked with them over the phone during our stay and after we got home but it was great to talk in person again.  The Doc said they did a "remarkable job"; that's very high praise coming from him.  He told us that there was even a bit of overlap with the cone which would allow some growth to take place in the heart.  Time will tell if its enough but it's very hopeful.  He also said the incision was completely healed and Jared could swim and bathe if he wanted.  He smiled when I said I think I'll stick to the conservative direction of waiting eight weeks, just in case.  He and his head nurse know us well after seven years and its nice.

However, I was more than willing to let Jared start riding his bike again when he reached the six week mark (the minimum wait time for that activity).  He was tired of being left behind or having to walk.  The six week mark happened to fall on a baseball practice night so we even had somewhere to go;  he was so ecstatic!  That weekend, we all rode down to the park and around the lake together as a family to celebrate.  We were all thrilled to be greeted by otters!  In the eight years we've lived here we've heard otters lived near the lake but Chris and I had never seen them.  We actually got to see three; two parents and a juvenile and the juvenile was more than happy to eat some bread we threw it.

Today is the eight week mark, and after golf lessons today I'm sure he's going to turn into a raisin soaking in his first bath in months.  We started golf lessons shortly after getting home. He had wanted to learn how to play golf for a while and it was one of the few activities not on the "to be avoided for six months, till the sternum heals" list.   He and Titus as having great fun.

I never realized how "blue" Jared was till after his operations.  To me he was Jared, my beautiful son and that's just how he looked.  Now that he's "pink", I realize how truly "blue" he had always been.

Another major upside since his surgery is that he now has an appetite.  For years I had crammed his smoothies with all the calories and nutrition I could.  Getting him to just maintain his weight the last year had been a huge struggle, trying to get him to eat something small and high calorie every hour or two during the day.  Chris and I were floored the first time he said he was hungry, he'd never been hungry a day in his life, we jumped up ready to serve him anything he wanted.  In the last eight weeks he's actually gained seven pounds and you can really see the food finally sticking to his ribs.  Yay!  Even his hair has thickened up considerably.

The other major upside is that he can now keep up with his brothers and his friends.  Before his surgery he would run out of breath and energy just jogging to the mailbox (about 30 feet), playground games like tag had always been out of the question for him simply because he couldn't keep up.  That has all changed.  He gives Lance a run for his money literally.  It filled my heart to see him running ahead on our walk last night keeping up with Lance.  Just like it did his father when he took them to the playground and he could actually play tag with the other kids.  In fact this weekend, for the first time I saw him with sweat running down his face he was playing so hard in the backyard.  Who would have thought sweat would look so good.

Sometimes I find myself forgetting to breathe again.  I had held my breathe for seven years and was accustomed to living in fear; its still hard some days to believe he's doing so well. We truly serve an awesome God.

Home Coming!

When I tried to book our return trip on the Auto Train they only had two sleeper rooms left and they were on opposite sides of the train.  We, of course, took them because we needed to get home.  I kept calling at least once a day after that in hope there was a cancellation and we could get two rooms together again where we could open the door in between and continue traveling together as a family.

We arrived a little later than we hoped at the Amtrak depot.  We were suppose to be there by 2pm but didn't arrive till 2:30pm and the final deadline was 3pm.  When we walked into the lobby to see that everyone was already on the train, my hope of switching rooms nearly vanished.  However, I went ahead and asked again anyway.

Jerry, the Amtrak employee, said there was little chance because the rooms we had, being on the end, were actually smaller than the other sleeper rooms.  At that news, I accepted our fate and resigned myself to be content we were getting on the train heading home in separate rooms.

Then all of a sudden, Phyillis (the other Amtrak employee at the checkin desk), shouts to Jerry "Is that the Ottos?".  To which Jerry replies an affirmative and she replies "Check the other reservations."  At that Jerry looks up the other reservation (Titus had to have his own reservation, long story) and Jerry apologizes and tells us that we DO have have adjoining rooms on the train.

Chris and I were in shock.  Why would she know who we were?  Why would she have taken the time and energy to find someone to switch rooms with us?  All I could conclude was that she was an angel.  I went over shook her hand with both of mine and gave her a tearful, heart felt thank you.  This was the final straw; God had truly taken care of us, even in the little things.

We really enjoyed riding the train. The service and food are great and it cuts out over 17 hours of driving.  I don't think little miss would have made it that long in the car. On the train she was quite content, albeit a bit adventurous.

When we got home the next day we were happily surprised that elves had been at work in our home.  They had hung up this great banner and placed cards from the cub scouts and another elf family had stocked our fridge with the essentials.

I feel I have not done a very good job of putting into words how much we appreciate all the different ways people have showed their concern for our family; through emotional support, prayers and many generous deeds.  Please know how much you have all touched and blessed our family.

Thank you with all our hearts!

The Otto Clan

PS.  As you can see he is healing well :-)

The Final Week in Boston

Sorry for the delay in posting.  We didn't have internet access the last few days at the hotel. 

Jared was feeling so well after his release from the hospital we had some time to play tourist before his final appointment.  They told us to just follow his lead for what he was up to doing and that's what we did. 

Since Grandma Elaine was leaving Friday, Jared wanted to do something special with her on Thursday.  Being that he was just released from the hospital I wanted it to be something fairly calm and not too germy.  Germs are still a major concern.
 
We found the perfect thing to do "Duck Boat Tours" of Boston. They are these cool WWII amphibious vehicles (nice and open to fresh air/less germs) decked out as tourists transports that take you on a historical journey across land and sea (or a least the Charles River).

Everyone had a blast.  The guide was called "Supersize", a super hero that admitted to eating too much fast food, but who what very knowledgeable about the history of Boston. Every time he said "SuperSize" we were all to chant "QUACK! QUACK!" to which Titus added "an adorable little echo".

We learned a lot about Boston; from the monkey living in the rafters of the "Garden" to the multi-million gallon molasses spill/explosion that drowned 21 people and flooded an area of downtown in 30 feet of molasses, to traditional points of interest and history.  My favorite part was when he pointed out the Paul Revere would has never yelled "The British are Coming!", since they were all considered British at that time.  He would have yelled something like "The Redcoats" or "The Regulars are coming!".  Once he said that I thought "Duh!" but I'd never questioned it before.  Just another example of how important it is to question everything and see if it makes sense. 

The boys on the other hand all had the same favorite part.....when Supersize let them drive the DUKW in the Charles river!  He even let Titus drive, they were thrilled! And of course they've been "Quacking" ever since.

Friday, we attended a home school program at the Museum of Fine Arts where they did a short tour, talked about certain pieces and did an art project.  WOW!  What a museum!  They had actual Egyptian sarcophagus, sculptures from the walls of Mesopotamian cities, Olmec statues, original painting from O'Keeffe, Manet, and Cassatt just to name a few.  Chris and I were in awe and we only saw about half the museum.  I thought we would have to go to Europe to see things like this.  It was so awesome to bring so much of what we had studied this year to life for the boys!

Additionally, the boys integrated so well with the group of homeschool children, what a nice group of kids.  They had questions and answers galore for the tour guide and talked with the kids during the art project.  Opportunities like that just don't exist where we live.  The people of Boston are so friendly and the city so full of wonder, culture and history we have grown quite found of it, I wonder how I am to entertain us all when we get home.

Saturday, by request we went back to the New England Aquarium.  Being gifted a membership was so nice beacause we all so enjoyed visiting.  We were there to see Myrtle the Turtle the first day in her new home.  Jared's favorite part was the little Blue penguins and Amber just loved trying out her balance walking up and down all the ramps.  I hope we can get back maybe for a visit before our passes expire to see the all new Aquarium.  They are doing a total make over of the main aquarium that has not been altered since 1969.

Second on the request list was to ride the Ferry, so this time we rode it over to the U.S.S. Constitution dock but walked a little way to visit the Bunker Hill Memorial.  You can walk the 294 stairs to the top of the monument.  I had no intentions of doing so, my poor knees would never make it but the boys decided too.  I thought for sure Jared would wait with me but he was determined to walk up.  Chris kept checking his heart rate and it was fine so up they went all the way to the top!  Now Chris ended up carrying him half way back down but that was to be expected since he'd just been released from the hospital three days ago.  Jared's quick recovery continues to amaze everyone; his doctors, his nurses, us!  What a miracle God has preformed!

Sunday, we kept it quiet.  We returned to the Boston Public Gardens.  We had visited it the day before his surgery with Aunt Susie but didn't get a chance to ride the fabled Swan Boats.  The boys didn't think there visit to Boston would have been complete without riding these bicycle propelled boats. They are a feature in two of our favorite children's books; Make Way for Ducklings by Robert McClosky and Trumpet of the Swan by T.S. Elliot.

This was our last ride on the train/subway.  I often think that was the boys favorite part of all our excursions.  I was just happy they were clean and safe; incredibly cheap and convenient was a bonus.

Monday, we hung out at the hotel and let Chris work some more, while I started to pack up.  He'd been trying to put in a few hours a day since Jared's release.  His work has been so accommodating, that too is a great blessing.

We chose to be positive and pack everything up and load the car before going to Jared's final appointment.  We knew if anything came back negative we would have to stay longer but after all God had done we felt confident we would be going home.  

The appointment was at 11:30am on Tuesday.  First he had some chest X-Rays, then an EKG and vitals.  I thought he would need an ECHO also but they decided against doing one.  Miss Ann the NP removed his remaining stitches and told us what our restrictions should be for the next six weeks.  No water (swimming, bath, etc), no bicycling, no roughhousing but other activity as much as he's comfortable.  When the doctor came in I asked him how the X-Ray looked, if he had more fluid build up we'd have to stay.  He said it was "better than fine, it was awesome", so awesome he lowered the directic he was taking in half.  He reiterated again, what so many had said during our stay, that Jared had recovered amazingly and that he was an amazing patient "we should be proud" and we are.  We are proud of Jared for his strength and positive attitude, his big brother who had to grow up a bit to help out a lot with his little sister and never complained once, and even for the Mighty Titus and his sidekick Amber who handled all the change like troopers.

We left the hospital, checked out of the hotel and were on the road to Scranton by 2:30pm.  We ran into heavy rains so we didn't make it there till 8pm.  But we made it safe and funny enough found out we were the "resident of the day".  We got a snack from the snack store.

That night Amber started a high fever,  thankfully it broke in the early morning.  We had kept Titus with Chris for the last appointment because he was a little snotty but he never got the fever thankfully.  Its amazing we all held out as long as we did.  

Next, we continued our reverse course back to Lorton, VA to take the Auto Train home.

More about our return home in my next post (sounds like teaser Hee!  Hee!). 

Chris FB Posts:

Sep 17, 2012, 9:43 AM

It's been a very surreal three weeks. Three Mondays ago I was loading the car amidst rain bands from Isaac. It was an ominous start to what would be the most difficult time in our lives. We were about to embark on a 1300 mile journey to someplace unfamiliar to have something done neither of us wanted to have done. Our beautiful boy had reached the end of his body's ability to cope with the heart defects he was born with. We had to trust that God had a plan and would watch over us. And did He ever. Just as when Jared was born, his strength and ability to recover simply amazed everyone involved with his case. We knew better. We both knew God had a plan for our little miracle. Our first glimpse came a few years after Jared was born. Our cardiologist told us a little girl was born in Altamonte, just north of Orlando, with very similar defects. From what they learned in treating Jared, the little girl was able to go home in 5 days instead of the month Jared spent in the hospital. We may never know what may come of this latest experience, but it matters not. It's our job to make the best of our current circumstances.
Three weeks ago, we left Orlando with the "blue" Jared. On Thursday, (Lord willing) we will return with the new and improved "pink" Jared. It's the same little boy we know and love, but his body is now operating at full capacity. Tina said in her blog that our expectation in coming here was to just save and extend Jared's life. What we received back was beyond our wildest imaginations. The cardiologist treating him here told us it was time to "mainstream" Jared. We were dumbfounded. It's been difficult to convey to ourselves what this exactly means. Our entire mindset towards Jared is going to change. Over the past few days, Jared has been changing it for us. On his release from the hospital, the instructions for activity level were to simply follow Jared's lead. His body would tell him when to slow down and rest. What we saw astounded us. He has been walking, running, jumping, and keeping up with his brothers, which is something he has never been able to do before.
Before we left Orlando, Jared would climb the stairs at home and be out of breath by the time he reached the top. Our stairs only have 17 steps. On Saturday, September 15, a mere 11 days removed from the completion of 8 hours of open heart surgery, Jared climbed 294 steps to reach the top of the Bunker Hill Memorial. We never rested for more than a few seconds and he never ran out of breath. Granted, I did have to carry him back down, but he needed a break, he did just have surgery, right??
I would like to personally thank everyone that has prayed for us, but that is impossible. Jared's story has literally spanned the globe and people from all over are praying. Don't stop, it is working and we are not home yet!!
Tuesday we meet with the cardiologist here and then head out. We should be home Thursday. Please pray that the doctor gives his blessing and for our safe travels.
Thank you all.

Sep 17, 2012, 10:20 PM

On her last night in Boston, Amber choose to stay up late and hang with daddy on the 25th floor and see the skyline

Sep 18, 2012, 2:35 PM

We are packed and leaving Boston!!

Sep 18, 2012, 8:59 PM

at Residence Inn Scranton: We arrived safely. Sketchy drive. It rained the whole way and it was very, very heavy at times 

 

 

Miracle of Miracles

I've been silent the last few days because I couldn't believe and didn't want to jinx the outcome they were putting before us.

After spending twice the time they expected in surgery, we were not surprised to here he would need double the recovery time too.  

Thankfully, God and Jared had different plans.

Instead of a week (or more) in the ICU he spent less than three days.

Instead of a week in the hospital after that he spent five days.

JARED WAS RELEASED FROM THE HOSPITAL TODAY!!

I think I've been holding my breath for the last three days as he continued to quickly overcome each obstacle needed to be released.

When they took out his other two chest tubes out Monday night, they wanted to get it done so quickly they did not use the amnesia drug but only morphine.  He was so tough, he didn't flinch or cry out, he just teared a little after it was done and said it hurt.  I kissed the tears away and told him how proud I was and how courageous he was.  The nurses showered the praise too saying he was the best patient they'd ever had.

I was so overcome I ran down to the gift shop to pick up another lego set.  I had to do something to praise my brave boy!

Next we just needed a clear X-ray, ECHO and 24 hours on oral instead of IV meds.  

The New England Revolution (professional soccer) came by for a demonstration Tuesday and there Jared was eight days out of surgery kicking the ball around in the hospital green.  The even more amazing part is he never squatted.  He used to squat a lot to get the oxygen he needed whenever doing anything athletic, even going for a walk.  When we met with his cardiologist last night he laughed about the soccer and said he was glad he didn't know about it.  

His cardiologist had other news that blew me away last night.  When we left for Boston, our goal was simply to save his life.  It had truly gotten to that point.  What the doctor offered us was beyond my expectations.  He offered him a "normal" life, free of almost all restrictions (except contact sports), possibly free of even another dreaded surgery.  He told us we could start to "mainstream" him.  This is something I never even hoped for, the thought that Jared would be "normal". 

Now that is not to say that we are out of the woods yet.  All this is dependent on everything healing well over the next six months to a year, a clean stress test and of course our cardiologist's approval.   We will still need to be vigilant that he not get sick, that the chest wound not get infected etc.

We will stay in Boston one more week for our follow-up appointment on 9/20.  At this appointment they will make sure no fluid has built up (still a possibility) and remove the stitches from where the chest tubes were located.

However, if all goes well, we will start heading home after the appointment.  We will reverse our course here, driving two days and then catching the train in Lorton, VA and arriving back in Orlando, Saturday, September 22, 2012.  

See I always knew Michaelmas was the best time of the year!

THANK YOU!  THANK YOU!  THANK YOU!

For Auntie Susie and Grandma Elaine who came to help us juggle everyone.

For all who supported us and prayed, we believe a key to the miraculous outcome.

For the incredible staff of Children's Hospital of Boston, nurses, doctors, child life specialists and volunteers I can not say enough good.  The longer we were in Boston the more humbled we were that we were able to get Jared truly the best care in the country and according to many quite possibly the best in the world.

Moving Forward Slowly

The hospital was actually pretty quiet over the weekend.  At night the nurses actually let people sleep and wait to give meds and vitals till they're awake which is nice.  Unfortunately, Jared's new roommate is a baby and poor thing didn't sleep well last night.  So sleep is encouraged for healing but sometimes a little difficult to get.

Saturday, he had one of his three chest tubes removed.  We were warned this would be incredibly painful/uncomfortable but he toughed it out admirably.  He continues to amaze me at his strength and positive attitude.  He even remember his manners with the nurses! Boy, is he an awesome kid!

After the tube was out we let him open one of the lego sets we had brought with us as a reward.  He was very pleased.  Oh, how I love to see him smile!

Now that he's out of ICU his brothers can visit and that really cheers him up.  He asks for Amber to sit with him a minute each time too, but only a minute she gets a little grabby.

 

Normal bodily functions are finally working after much work last night.  Amazing what you take for granted, all the little muscles unused for a week and drugged with a paralitic forget how to function.

Also as of yesterday afternoon they finally figured out which med was making him throw-up.  So hopefully he can start eating more.  In the last week he's had two smoothies, three dinner rolls and a bowl of oatmeal, not exactly sufficient caloric intake.  

Beside eating more, our other goal is to take three short walks a day.  There's not much we can do about the drainage but hopefully it will slow down today and he can have the other tubes removed tomorrow.  If he can that will be a huge step forward.

Beside the obvious above, please pray that there is an opening or that the manager and I can work out an arrangement at our noon meeting today that will let us stay here till Jared is out of the hospital.  As things stand now we need to change hotels this Friday and the thought of moving is really stressing me out. 

 

Chris FB Posts:

 

Sep 10, 2012, 2:18 PM

Just received word Jared's remaining chest tubes are coming out TONIGHT! After this, he only has an IV in one hand. This is truly remarkable. Every person from the hospital is amazed at how he looks and how he is acting. A miracle if you ask me.
Jared was doing origami with a life services person at his bedside. The amount of activities and such is astounding here. They are really in tune with kids and what helps them recover and keeps their spirits up. If anyone ever needs the best care, Children's Hospital Boston is the place to be.
Keep praying!! It is working.

Sep 10, 2012, 6:05 PM

Tubes are out!! He looks and feels great.

 

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.