Thursday 

After a pretty good night of sleep and a quick repair of the hospital bed hair, Ellie is waking around this morning.  She’s a bit sore and taking it slow but moving around.

   

     

The echo this morning showed really great flow across the mitral valve where they ballooned it and the pressures have gone down. Dr. Marx is extremely happy with the results so far and has told Ellie that this should help her feel a lot better. He wants her to email him in 5-6 weeks to let him know how she feels and will to see us back here in six months. 

This is amazingly good news. So much better than any of us expected. It also looks like we will get sprung from the hospital soon.  

We will stay tonight in the Yawky Family House and head home tomorrow. The flights are all oversold so it looks like we will be taking Amtrak back to Virginia. That will take about 12 hours to Lynchburg but Ellie will be able to move around and if we go tomorrow we won’t have to switch trains.  There is even wifi on the train so we will be occupied for the journey. 

Amazing 

Ellie is out of the cath lab. The doctors, including her cardiologist Dr Marx , the cath doctor and head or cardiology here at Boston conferred and decided to do the balloon not just once but twice. They feel like it has stretched the mitral valve and there isn’t a significant amount of extra leakage. 

There will be another echo or two before we leave the hospital tomorrow to see how things are but they have cancelled the open heart surgery on Friday.   Her doctors want to -as my Daddy would say- adopt a wait and see posture. If this improves her symptoms it will allow her to get bigger.  This would mean they would be able to put in a larger valve that would last longer when she finally does have the valve replaced. 

All of this is amazing news and so much more than we ever expected to hear. Ellie came out of the cath the way she usually does, a bit upset and disoriented. She’s not too sure about all of this and is worried that she still won’t be able to run and play with her friends.  She’s also a bit worried and wanted to know what would happen if the balloon popped. After explaining that they didn’t actually leave the balloon inside her and putting on the new Barbie Princess Power movie she’s resting and calm finally.

  

If all goes well the next few days we are hoping to come home this weekend. 

Thank you for all of your prayers and thoughts. They continue to mean so much to all of us but especially Ellie. 

Dilating

Just got a call from the nurse they took measurements and are going to try to dilate Ellie’s mitral valve. Since Ellie’s mitral valve isn’t normal and was created for her it’s very tight and small. This could make dilation tricky but they have decided to give it a try anyway. 

The problem with any dilation of the mitral valve is finding the balance of releaving the pressures and not creating too much leakage. Since Ellie’s valve is different than a normal mitral valve it’s even more difficult to make sure they balloon enough without tearing too much and increasing the leakage she already has to a point that she couldn’t handle. 

The decision was made that it was worth the risk to try. If it works it might buy us a few more years before open heart if it doesn’t she will be getting a valve replacement this week. 

I’ll update when I get more info. 

Wednesday

We were up and at ’em early this morning because Ellie was the first cath with her Doctor today. She was nervous and scared to see what they would find and decide about surgery but thankfully she was tired from last night.  She was back in the lab and out like a night by 7:45 with her ever faithful Sandy by her side. 

 

   

Our first update was at 8:45 they had her cath in and we’re taking measurements to decide if they were going to attempt to balloon the mitral valve or not. 

Next update at 10:00.

Tuesday Part 2

After our exciting morning at the hospital, we headed back to the house where we are staying for a little R&R before the big Red Sox game.

What can I say?  Fenway is so awesome! There are loads to see and do outside the stadium and I really think there isn’t a bad seat in the place.  Ken went the extra mile and scored us extra good seats with an excellent view of home plate. 

   

  

   

 

The atmosphere there was fun and exciting and they even have a suite open for kids to go meet the mascot the green monster Wally. It had loads of games and things for kiddos to do.  Ellie even got a first timers pack which included real soil from the stadium. She was extremely excited. 

   

   

 We ate hot dogs , drank coke and a few beers.  We sang Take Me Out to the Ballpark and Sweet Caroline.  The Red Sox played a close game against the Nationals but in the end pulled out a win.  Nothing more exciting then being at a game where the home time wins (unless you are rooting for the other team which we weren’t)!

  

Ellie ate and drank all she could before and was tucked in tight by midnight in preparation for her big day the next day. 

Tuesday Part 1

 Bright eyed and bushy tailed we were at the hospital early this morning for Ellie’s pre-cath appointment. 

The day started with the worse part -blood work. Ellie doesn’t have the greatest veins -thanks to me – and is prone to a bit of dramatics when it comes to blood work- I wonder where she gets that.  So blood taking is never fun.  Today with numbing cream and a pro for our phelmbot it was quick work. 

Next came all the stuff we do at all her appointments weight, height, EKG, and an expanded echo.  Ellie had a chest x-ray and a chat with the child life specialist about anything she was a bit worried about.  

   

   

The attending fellow came to discuss what they were going to do in tomorrow’s cardiac cath and to answer any questions Ellie or we had. She was great and after she went through the main points and Ellie had left the room, we talked about the risks of the cath especially caths that are focused on the left side of the heart. They will be taking pressure measurements, looking around and may even try to dilate the mitral valve while they are in there.    This has been tried before in her last cath three years ago with no real effect.  

The information gathered in the cath lab tomorrow will help in making decisions going forward with Ellie. They will know during the cath tomorrow if they will for sure be doing open heart on Friday to replace her mitral valve. 

We saw our main man Dr Marx and his right hand woman Mrs. Anne and had a quick chat about this week. After that we were free to go. 

Ellie is the first case in the morning (we have to be at the hospital at 6:45am and the cath is scheduled for 7:30am). It is also expected that she will stay in the hospital tomorrow night.

This time tomorrow we should know for sure if she will be going into surgery on Friday.  Unless they find something very different once they get in there, it looks like that’s what will be happening. 

We finished appointments around lunch time and hit the musical stairs on our way out. 

  

The best part of the appointment was finding out it was no food after midnight and not earlier which means it’s hot dogs and peanuts for Ellie at the Red Socks game tonight!!

Monday

We flew up to Boston today out of Richmond on Jet Blue. There is definitely something to be said for buying full fare tickets so much less stress then standby.

After checking into the house, which will be our homebase for the foreseeable future, we went out exploring a bit.  We ate at the oldest tavern in Boston and walked along the freedom. We even took the chance to check out Faneuil Hall.

   

   

It was a great distraction and the weather was amazing. 

Tomorrow all day pre-cath appointment at the hospital.

Big Week 

We leave on Monday for Boston. Ellie has her cardiac cath on Wednesday and is scheduled for second open heart surgery on Friday April 13th.

I’ll be updating everyone on her progress here so please check in for the latest info and thank you for your good thoughts and prayers in the next week or two. 

Awhile

It has been awhile since I’ve been on and posted.  Life often takes unexpected twists and turns and that’s what has happened to the girls and my lives.

Ellie, Sadie and I are back in the States and living very close to my parents and family.

Now that we are mostly settled and life has calmed a bit I will begin to post again.  Thanks for hanging with me during my absence.

Vistors from afar

We have now officially had our first visitors!  Ken’s dad and stepmom made the crazy long journey to come bring us a little bit of home for Thanksgiving.

There is so much to see and do here that we, on purpose, left a few things for when people came to visit.  Site seeing is a bit difficult this time of year because it is the rainy season.  This means it’s almost as hot as the non rainy season but it now rains every single day.  If the sun is shining in the morning it will rain in the afternoon and vice versa.  Then there are the all day rain days.

This makes planning site seeing a true adventure.  For example, we wanted to go have dinner and see all of the amazing lights on Orchard Rd. for Christmas.  It’s famous around the island for having the best Christmas decorations and one of the malls even makes snow.  This was altered to just dinner because of a crazy rain storm.

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We went on an open-top Hippo bus tour. The name hippo was very funny because it rained there too.

IMG_0781We went to see the amazing Gardens by the Bay.

IMG_0763 IMG_0765 IMG_0728 IMG_0738 IMG_0697 photo 5 photo 2 photo 3 IMG_0778This was a place I had been wanting to see but had no idea how truly awesome it was.  I couldn’t believe the scale and scope of all the different types of plants and flowers.  The pictures don’t do it justice.

There was a visit to the Merlion.

photo 2Lots of yummy food was ate and we finally did what the girls have been wanting to do since we moved here, took the cable car over to Sentosa.

IMG_0841 IMG_0858 IMG_0857 singapore_cable_car(1)Everything we did was so much fun and the best part was being able to share our new home with family.  It makes us feel not so far away to know when we talk of Ellie’s school or some place we are going folks from home will be able to picture it.

Thank you to John and Judy for traveling so long and so far to visit and spend time with us it meant so much.