Simon's Surgery Report...

Here is the update you've all been waiting for!  I did not know how to say it all correctly, Molly spelled it out for us.  Thanks for your prayers!  ~Beth

                                                             Check out my new glasses!

 Simon kept crossing his fingers the day before his surgery!

 

From Molly:
What a day we had yesterday!!( I apologize if this comes out scattered and all over the place... I am still so overwhelmed from yesterday, it is difficult to explain all that happened).  Simon was scheduled to have the scar tissue cut out of his esophagus and have the initial repair repeated.  In other words, they were going to cut the esophagus in half and start over. This is a major thoracic surgery with many risks involved.  He would have been on a ventilator and in intensive care for some time.  This was not a decision we made lightly.  The surgeon and I have had countless conversations about what the next step for Simon should be and how he is progressing.  To look at Simon, you would never know that anything was wrong with him, he looks like a healthy 16 month old.  The problem arises when feeding Simon.  He cannot eat like a normal toddler.  He has a very difficult time swallowing anything very big, and also struggles with acid re flux.  I spend a
 great deal of my day pureeing, chopping, mashing, overcooking, etc, the small variety of foods that he can handle.  Despite my best efforts, several times a week he has terrible coughing episodes because food is stuck in his throat.  In spite of this, he is doing remarkable.  Though he is very skinny, he is growing at an acceptable pace, and is quite tall.  He is developing well and has started walking.  He is behind in a few areas and has recently started wearing glasses, but there are no huge red flags considering his prematurity and his condition.  There are so many children with esophageal atresia who are not as fortunate as Simon. Some are tube fed for so long, they have oral aversions.  Some do not have enough esophagus to work with and have to have their stomach pulled up to make the connection.  Some are tube fed around the clock even after they are released from the hospital.  We are so blessed that these are not our realities.


 So after a very long conversation with Clint, Dr. Soldes (Simon's angel) Dr. Parry and myself yesterday we all came to the same conclusion... The risks of going forward were just too high.  No one in that room yesterday knew what was going to happen if we proceeded as planned. Dr. Soldes put it best... "The greatest threat to GOOD is BETTER" Simon is good, maybe as good as he is going to be.  To risk all he has overcome just seemed too scary.  So the docs went in with a scope to take a look and decided that we wold leave well enough alone.  We will work with him as he grows to teach him how to chew really well and drink lots of liquids while he eats.  So for now that is the plan.  I cannot put into words how relieved I was to hear this yesterday.  I had the worst feeling about the entire thing, I JUST DID NOT WANT TO DO IT! Not at all.  So when the docs brought up they were considering not moving forward, I was shocked at first, but so incredibly
 grateful.  Dr. Soldes and Dr. Parry have been with us through every step of this, and I have never doubted them for a second.  They told us yesterday they had been talking about what to do next with Simon for 6 months.  I don't doubt for one second that is true, I truly believe they care deeply for his well-being. I can honestly never say enough good things about everyone at Akron Children's.  I have talked to families who have traveled literally across the county and the world to get the level of care that Simon is receiving 7 miles from our house.  Those doctors, NICU docs and nurses, Maternal fetal medicine, outpatient surgery, the surgeons office staff, and countless others have all taken such great care of our little guy and us too! There just aren't words to express how grateful we are.
Thank you to everyone who called, sent texts, facebooked, sent cards, came and waited with us, sent lunch, and most of all prayed for all involved yesterday.  There is not one doubt in my mind that all those prayers were answered!!  Our journey is far from over, but Simon shows us everyday that he is the strongest little guy around, and I know he will be just fine!



Look who turned ONE!

From Molly...

Sorry it has been so long since we have updated.  Simon is doing well, not much has changed recently from a medical standpoint, still having surgery every 4 weeks or so.  The surgeon ordered some tests and once those are done, we will decide what the next step will be.  We sought a second opinion from Boston Children's Hospital, where they have a program 100% dedicated to Simon's condition.  They have one suggestion for a treatment which has not been mentioned by our doctors, but they gave the impression that our surgeon was doing pretty much exactly what they would be doing.  So while going there isan option, Akron Children's has provided the most amazing care, and there really is no reason to at this time to make such a drastic change in his care.

Simon turned ONE on April 14!!!  I cannot believe he is one already.  I never knew that time could go so quickly, yet painfully slow at the very same time.  He had an amazing birthday, and enjoyed his cake very much :) .He has four teeth, with more on the way any day now.  He is crawling all over the place, and pulling himself up to stand, though he seems in no hurry to start walking... and that is just fine with me.

I will be sure to update as soon as we have some news about our next step with the surgeon.  Our appointment is on May 13th, so hopefully we leave that day with a concrete game plan. Thanks so much for caring about and praying for our little superman!!

Amazing News

Simon went in on Wednesday to have surgery, as planned.  The surgeon and I had spoken previously about getting rid of the string in Simon's nose, but he wasn't 100% sure he was really going to take it out.  Much to my surprise, when the doctor came to the waiting room to get me, in addition to saying everything went great, he also said the string was GONE!!! 

     

The string was the doctor's insurance policy of sorts to make sure the esophagus was not able to close completely.  Early on, there was more than one surgery where his esophagus was only open the diameter of the string.  The string served no other purpose... it is not a feeding tube, that is in his belly.  The doctor is confident that we all know what to look for now, and that we will be able to get him into surgery before it gets too tight.... thus the string is no more!! Other than for a couple minutes here and there in the NICU (when Simon pulled his tube out) this is the very first time we have seen his beautiful face without something taped to his cheek and going down his nose.  Needless to say, we are over the moon!!

Overall, the surgeon is very happy with the progress Simon has made.  The plan from here is to dilate every 6-8 weeks (instead of 2-3) and see where that gets us.  I asked about repeating the major surgery and he said though it is not off the table, that for now, we can put that decision off for a while.  All in all it was an amazing day!! Simon woke up from surgery in a wonderful mood, he was smiling and flirting with all his beloved nurses (his favorite thing to do).  So he is home, and doing great!! It is so nice to be able to kiss his little cheek and see those beautiful dimples!! The next surgery should be right before his FIRST BIRTHDAY!!!  I can’t believe how quickly the time has gone.

Picture Time!

Baby Simon, Enjoying the Super Bowl!  Feb, 2013.

 Baby Simon LOVES to eat, but really enjoys feeding himself!

Simon's partner in crime!  

Can he be more happy or perfect?

Simon waiting for Swim Class, he loves it!

Can you believe this little guy started off this tiny!  What a difference 10 months makes.

  Thanks for all your thoughts and prayers.

SIMON UPDATE

Molly Sent over a Baby Simon Update:

Baby Simon is growing and changing everyday.  He has two bottom teeth and is working on more.  At his 9 month appointment he was 16 lbs 9 ounces and 27 inches long. He still not quite on the chart for weight but his height is in the 10th percentile.

We started him in swim lessons at the YMCA and he loves it!!

Up until Christmas time he was having surgery to dilate his esophagus about every 2 weeks and receiving injections of steroids at the same time to try to keep his surgical site open.  At his last procedure on December 20th the surgeon decided he needed to see exactly what was going on in there.  The decision was made to go without dilating for 4 weeks and then have an upper GI done to see how big the effected area actually is and what to do next.

I was a nervous wreck waiting 4 weeks!! He has never gone that long without a procedure... I was sure he would be chocking and coughing and miserable.  Well in true Simon fashion, he did GREAT!!!  Clint and I were shocked, we did not have to use his feeding tube at all, which is such amazing progress!  So on January 21st we went to the hospital for his scheduled procedure.  They let us stay in the room while the did the swallow study, which was great.  The best way I can describe what his esophagus looks like... You know those balloon artists who twist balloons to make animals and stuff?  In the x rays his esophagus looks like one of those balloons that has been twisted in the middle.  It is nice and open and then there is a really narrow part and then it opens back up again.

The doctor is thrilled with how well he has stayed open, though it is obviously closed, just not completely.  The point of waiting and doing the upper GI was so the surgeon could see if he could go in and redo the initial repair surgery.  If the length of the problem area is short enough (which it apparently is) he could go in, cut out the existing scar tissue and connect the two fresh ends.  There are risks involved with doing this, as it is major surgery involving moving his lung, a ventilator, chest tube etc.... all things Simon has already experienced.  I spoke to the surgeon on the phone and he seems to want US to decide if we should redo the procedure now, or wait a whole longer and see what happens.  There are so many pros and cons to every possible scenario, we aren't really sure what to do.  I personally feel like I don't have quite enough information to make an educated decision at this point.

In the mean time, Simon will be having a dilation surgery (number 14) on Wednesday February 6th.  I am hoping to pick the doctors brain a little more at that time and have him guide us in this decision.

I am so sorry that I have done such a poor job of sharing updates, I will do my best to keep everyone posted as things progress in the next few weeks.

As always, thanks everyone for your prayers and concern for our little man, it means the world to us!!!

Update from Molly about Simon

Molly sent me this today!  Helps when she sends exact info as I am bad at keeping up with the medical terms.  I am sure Molly wishes she knew none of this, but she is definitely the expert!

Simon's doctor is really trying to find a solution to get the esophagus to stay open so he doesn't have to operate so often.  So in 2 weeks when we do this again, he is going to try injecting a steroid called kenalog directly into the scar tissue in his esophagus.  The hope is that this will slow the stricture so we can spread the procedures out  bit.  If that doesn't work he is considering going back in and cutting the whole piece of scar tissue out and repeating the repair.  This is obviously not what we were hoping for.  The surgeon said he has never had a stricture that he could not get to stay open with dilation, so he is pretty frustrated too.  I know he has Simon's best interest at heart and will figure out a solution.  All the things he has mentioned are things Boston Children's hospital does everyday... they have a program which is entirely dedicated to esophageal atresia.  It is also where Dr.  Foker (the Dr who came up with the procedure that grew his esophagus so it could be repaired) practices.  Anyway, the point is, Dr. Soldes WILL figure it out, I have no doubt in my mind.  

Look who started on cereal!!!!!!  I am thinking he likes it! : )  Since he is gifted (LOL) he feeds himself already!

Here is just a happy, lazy day!

It's that time again

Simon is in need of his routine surgery again.  This will be the norm for the indefinite future.  Poor Simon's little opening in his esophagus just does not stay stretched enough to stay open without surgery.  He still has the little string from his nose to his throat that he has makes sure it is open at least the width of the tube.  I would day that tube is no thicker than the center of a Q-Tip. After the surgery, when the esophagus is dilated it is 3cm in diameter for the opening.

So back to Akron Children's they go tomorrow for the surgery.  Simon did much better recovering the last time.  It takes a couple days to get the anesthesia out of his system and then he feels good until a day or two before his surgery. When he needs the surgery he is not feeling so well.  So today is a long day for Simon and Molly as they await the surgery tomorrow.

I visited with Simon 2x last week.  Both times he was super happy and full of smiles!  He is rolling around a bit and it seems like he has so much he wants to tell you!  I just love him so much!!

Blogger is acting up today, but I have pics to upload.  I will add them soon.


Please pray for Baby Simon that they do a great job on his surgery tomorrow!  It's getting into cold and flu season and both of these things would be really bad for Simon to catch.  Please keep him healthy!