Cardiology Update

Tuesday we took C to Tampa to see the electrical cardiologist.  Nothing new or out of the ordinary as this was her 6 month check.  However, we had to see the other EP in the practice as we still cannot see the EP cardiologist she has been seeing.  Stupid non-compete clause and litigation.  Don't even want to get started on that. 

Good thing is the doctor was fully up to date on C.  I think because we pitched such a fit about not being able to still see the other doctor they are really trying to accommodate us.  C is not anywhere near a typical heart patient and just one tiny thing being missed could cause huge repercussions for her.  Found out her latest holter is in the acceptable range (does show small blips of tachycardia) but is actually improved from her previous holter.  The doctor is also very pleased that we are getting this much stability and control with her being on what he termed "a relatively small dose" of the medicine.  We were not too happy that he wants to leave her on this medicine until she starts showing signs that there is a problem (this medicine is highly toxic with lots and lots of nasty side effects) but I am ok with taking a more conservative approach right now.  The doctor we are seeing right now has been in the practice for over 30 years and has tons of knowledge so I trust that he knows what he is doing and that he is doing what he thinks will be the best course of treatment for C. 

He also does not want to do anything interventionally with her right now.  He does not feel that he would really accomplish much by doing and EP study right now and does not really want to put her under that much stress.  He is ok with her having the cath to close her fenestration.

So.  With all this, looks like we will be doing cath sometime soon.  Will be just to test close the fenestration to see if she tolerates the closing.  If she does tolerate the closing while in the cath lab then the doctor will permanently close the hole.  This is really not that big a deal as the hole was put there after surgery and will eventually close on its own anyway. Plus, it is standard procedure to go in and close up the fenestration after a year.  I am not looking forward to putting C through another cath but if this will help her sats and get her off the oxygen then this will all be for the good.

Not sure when we will be scheduled but probably in the nest two months.  Hoping it will be far enough out that we are not putting her in the hospital with all this flu still going around.  Her contracting the flu would be devastating. 

Forgot to mention the best part of the visit (other than that C is being well controlled with meds).  The doctor told us that on the grand scale that the tachycardia arrhythmia would be 3rd on his list of worries.  After, the big number one of infection and number tow, blood clots.  So, I feel a little better that he feels these arrhythmia's are not the most pressing of concerns and we need to approach the electrical issues the same as we approach the diagnostic (structural) defects.

Look for pictures from the night parade after this weekend.  The big parade is Saturday night. 

We Did A Parade

Every year, there are two parades that happen in my town.  One is for children only and for the last two years we have been saying that we wanted to make a float for C and promote awareness for CHD's.  The children's parade is always right in the middle of CHD awareness week and this year we actually did make the float and ride in the parade.  We made special shirts, had lots of decorations, lots of help and lots of walkers.  C was the star of the show and did her best to charm all the parade people.  We handed out heart beads and information.  My sister had two different families tell her that their own children were also CHD kiddos.  I think we accomplished our mission...raising awareness. 

On a side note, we took third place in our division (yay!) and even more impressive, my husband was personally asked by the parade chairman to participate in the big parade this Saturday.  Over 200,000 people to reach out to...lets keep spreading the news. 

C is just one of the 1 in 100.

What is Heterotaxy?

Carolena has Heterotaxy Syndrome, a rare, complex and complicated make-up of organ defects that mostly affect her heart.  She was born with only half of a functioning heart which puts her in the category of single ventricle anomolies.  Although she is similar to children with Hypoplastic Left Heart Syndrome, she has other issues she must face that children with HLHS do not.  Our biggest challenge, outside of her single ventricle and not having a spleen, is that she started having deadly arrhythmias at 9 months old.  Fortunately, she is stable with medication and has not needed too much intervention.  The electrical issues are the scariest thing for us as we never know when they will strike and if she will respond to treatment.  We were well versed and prepared for a child with HLHS, not so much for a child with Heterotaxy Syndrome.  For more information here are some great links:

http://www.heterotaxy.org/Pages/what_is_heterotaxy.aspx

http://www.chop.edu/service/cardiac-center/heart-conditions/heterotaxy-syndrome.html