Friday, December 28, 2012

Hope for the Holidays

Well, little Ronan, we have sure had an eventful last few weeks.  And of course, you have taken the path we did not expect. 

As you may remember from my last post, we had concerns that Ronan may have hydrocephalus, which is fluid on the brain.  His head size had dramatically grown between his 12 month and 15 month appointments.  We were very worried on many fronts - we needed to get in at CHLA for a high res MRI as soon as possible, so that we would potentially have time to schedule a surgery before Christmas.  Months ago, I scheduled a cardio-genetics at Cincinnati Children's Hospital on December 21st.  We really wanted to get Ronan to that appointment, and of course, Christmas.

Ronan went in for his high res MRI on the 18th.  We were relieved to find out that Ronan simply has a big head :)  No fluid on his brain.  Sometimes kids can grow in one area first, and then the other areas catch up.  Here's to hoping his body catches up to his 96% head!  If that happens, we will be purchasing a very, very expensive bottle of champagne.

Ronan getting his sedated echo
We then flew to Cincinnati for the holidays, and for our cardio-genetics clinic appointment.  Ronan had a sedated echo and EKG, and we met with several specialists.  To remind you where we were with Ronan's heart, he had a fairly straightforward case of pulmonic valvular stenosis, where his pulmonary valve did not function properly.  They were not able to open up the valve with an angioplasty, which is the usual path for children who have this type of CHD.  Ronan had to have his valve removed, and a transannual patch with a monocusp valve put in place.  Although most cases can be resolved with an angioplasty, Ronan's route was not totally unusual.  The concerning part of his heart was his right ventricle thickness and function.  It was not completely indicative of the state of his pulmonary valve, and we were concerned that there may not be enough blood flow, or that he may have cardiomyopathy.

Paul and I went into the appointment not really knowing what to expect.  Our cardiologist had started to talk to us about what a heart in that condition would mean long term.  We were scared.  The sedated echo gave doctors a much better view of his heart than we expected, and best yet, the news was good.  We have never had such an optimistic and uplifting appointment as that one.  Dr. B told us that Ronan's repair was "beautiful", and that he may not need to have another open heart surgery until he was 15, and at that point it could be a cath procedure.  Dr. B had no concerns over his right ventricle, and felt that his function was good.  

After the appointment, Paul, Ronan, and I had the privilege of having lunch with the parents of a little boy, Connor, who is 12 weeks old and is recently diagnosed with CHARGE syndrome.  It was such an incredible experience for us.  We remember too well those early months, and the time when we honestly wondered how we would ever a happy family.  I remember wondering how we would ever manage the frenzied pace of our lives.  Now, I could not be happier.  This journey feels like a marathon, and there are certainly days when I wonder if we can keep this up, but it feels like a marathon we can run together.  I hope that we were able to convey that sentiment to Nikki and Josh, and to show them how different things can be in just a few months or a year.  This was the best thing I did all year, hands down.

This holiday season has been one filled with hope for us.  Hope that Ronan is on his way to a big growth spurt.  Hope that Ronan's heart continues to impress his cardiologists.  And hope that we tried to share with other parents early in their CHARGE journey. 

Tuesday, December 11, 2012

A bump in the road...

I've take a bit of a hiatus from blogging to enjoy a rather long and delightful period of normalcy in the Marsolan house.  Besides the regular follow ups and therapy appointments, we just enjoyed being a family.  It has been awhile since it really felt, well, normal.  Paul and I did things like take Ronan to the Santa Monica tree lighting ceremony, where he promptly decided he wanted to go to bed 5 minutes before the lighting occurred.  We got a tow behind for our bikes, and took Ronan out for his first bike ride.  Ronan saw Santa for the first time.  It's been a special last few weeks...

But, we do have a new bump in the long and winding road that is Ronan's health.  Ronan has always had a bigger head.  When he was born, his head was around 40%, while his height and weight was more in the 15 - 25%.  He held those stats up until his heart surgery.  After running into some complications with chylothorax and chlopericardiumx (his lymphatic system was damaged and he couldn't process medium chain triglycerides for about 2 months), Ronan dropped off the growth chart for weight and height.  By about 10 or 11 months, we were creeping back onto the charts, but his head has always hovered around 40 - 50%.  After seeing our pediatrician around 13 months with Ronan at these same stats, everyone was concerned when his head jumped up to 96% at his 15 month appointment. 

If he were to have hydrocephalus (fluid on his brain), that could cause him to be uncomfortable and could delay some of his development.  Once this pressure is alleviated, sometimes children can see a nice improvement in their development.  Part of me hopes if the tests show hydrocephalus, that maybe Ronan will see an improvement with his development.  In the grand scheme of Ronan things, this is a minor test, and if needed, not too major of a procedure. 

Ronan will go in for testing tomorrow.  Please keep him in your thoughts.  He has a critical airway, and he can take a bit longer to recover from anesthesia.  I have mixed feelings on what I hope to see.  But I do know whatever it shows, it won't change Ronan's strong spirit.