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life goes on :) update August 11, 2012

posted Aug 11, 2012, 11:38 AM by Sean Molby

So I guess I forgot to post about T's dental, cardiology and orthopedics appts...my brain has been functioning at low speed lately so bare with, LOL

Dental: T's teeth look great...no damage from all the different meds he took for so long or the sweeties he lived off of for nearly a year J  his dentist does not want us weaning the binky till after surgery-go figure, she was extremely pleased with how things looked and T actually cooperated (mostly)

Cardiology:  very good visit and T cooperated for EVERYTHING: weight, height, O2 & BP check, exam, EKG AND his ECHO- he is usually a turkey for at least one of these... anyways everything looks GREAT!!! The Dr.’s had a long debate over T and to no surprise; they agreed that T is following his own path and not the usual, again!!! LOL- normally the requirement for the 3rd stage surgery is once they get to 15 kg (33 lbs) well T is there BUT he is there earlier than most kids...usually heart kiddos have issues with gaining weight, but T is SOLID muscle, the kid is like a MAC truck, I swear he is made from titanium LOL which isn’t much of a surprise as he is such a super man to begin with!!! J  Anyways T is doing SO AMAZING; but they can’t go off the normal guidelines, they need to base his surgery time on his entire size not just his weight. As T is only 2 and weighs more than most 3-4 yr olds with HLHS but is the average size of a 2 year old they are a bit hesitant to chance that he isn’t quite big enough yet... he did say that their records show that T has the past 2 years had a HUGE growth spurt between June and October and he figures he may follow that trend again this year but even if he grew an entire foot they are going to wait. So after lengthy discussion it was decided that we will be postponing surgery till spring... this will give T a chance for his left lung vessels to grow in hopes of reducing his risk of developing severe pleural effusions and chylothorax, a common complication after the Fontan. Him having bigger and stronger lung vessels can help reduce this risk for several reasons, of which I won’t bore you with J

T has his next follow up the 1st week of Feb 2013 and at that appt we will set a surgery date for sometime in Feb., March, or April, or very possibly later... They refuse to do his surgery this fall even though they are confident size wise he will be ready. They won’t risk it during the high RSV/Flu season; otherwise he would probably be getting it in October. Kaine said he wasn’t willing to risk T’s health since he knows he will be fine till early next year. His surgery date will be based on several factors: how many RSV/flu hospitalizations there have been by Feb, on whether Dr. O’Brien will want another cath, which Dr. Kaine is advising against-he doesn’t see the need as his cath in May went so well and everything looked as perfect as it can-, on T’s health over the winter, and our preference as well-  right now we are trying to decide if we want to do it before T’s 3rd bday or after- not really sure if there is a “better time” to hand your little boy over so they can open his chest and stop his heart but regardless it isn’t a choice we have the luxury of refusing.. No matter when we decide it will be hard!

Orthopedics: T was evaluated and instead of jumping straight into leg braces they are going to start with inserts in hopes that it will correct T issues..; for those that didn’t know, even though T can walk, run, jump etc he has a severe turning in his feet- on his right foot he almost walks on the side of his foot. It doesn’t seem to bother him but to me it looks extremely painful. There is a slight chance he could grow out of it but we didn’t feel it was something we should chance and we are also concerned of the long term effect it could have on his ankles, legs, and especially his knees! His inserts will be here in about 2 ½ weeks and then he will be stuck in shoes ALL day- but I don’t see a problem as he LOVES to have his shoes on.

Overall things are going well. T is doing amazing… we also had a big debate over starting to take T to church… luckily we have an amazing church and some volunteers (that we haven’t met yet) that are going to help with T. There will be some training but we will have someone with T that is dedicated just to him during any service-so they can monitor him and the health of the children around him and remove him from any possible health risk and ease our minds about exposure!! This will give Sean and I a chance to attend together services together instead of alternately weekly… kind of nervous but excited cause this is a first step to so many more for us… as scared as I am for his surgery in a way I am anxious because I know that after so many things will be changing for the better!!!

Thanks for continued prayers and I hope everyone is doing wonderfully!!

~ Christy

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