Friday, January 11, 2013

A New Year

Yesterday we met with the cath cardiologist.  I really dread the appointments with this doctor.  Not because I dislike him, actually quite the opposite, I simply adore him but I dread these appointments because once we see him I know we are looking at doing some kind of procedure, most likely a heart cath.  Ugh. 

I knew this day was coming.  I knew that C would eventually need another heart cath.  I know that she will never, ever be to a point where she will no longer need any procedures.  Knowing all this, still this is not any easier.

However, yesterday was fine.  C did well except in the beginning.  I think she may still have some residual memory of the hospital/facility in Tampa as she was acting very scared during her work-up/eval.  She was unusually quite and still.  Very not like her.  She generally is in the nurses face, telling her what to do and how to do it.  C likes to help and will put on the ekg stickers, help with the blood pressure cuff, help with the pulse ox and loves to push the buttons to turn them all on.  Not yesterday, she laid completely flat on her back and would not move.  So, that was a little freaky but after that was done she was good and started to act more normally.  We generally do our cardio visits in Sarasota or even St. Pete so I think she must have thought that since we were in Tampa something big must be going on.

Fortunately for all of us, C's echo looked good and the only thing that remains to be a problem is her lower O2 sats.  She is still on oxygen, although it only really makes a difference at night.  So, the cath doctor wanted to talk about closing her fenestration.  He could tell from her echo that is large and wide open.  Since all the other issues that could cause her to be blue have been ruled out the cath doctor is very confident that Cs sats are still low due to too much blood shunting across her very large fenestration.  He talked to us about doing a cath, rechecking everything and then test closing her fenestration.  If she tolerates the closure while in the cath lab, then he would permanently close the fenestration.  With the fenestration closed then Cs sats would come up.  That is the plan at least.  The doctors all seem a whole lot more confident about this now then they did a few months ago.

The other problem we have (and of course it is not a small problem) is that Cs EP (electrical) cardio left the practice and is now in Orlando.  This should not be a problem as we do not mind driving to see him and would still like him to be Cs doctor however when we tracked him down and spoke with his office we were informed that he could not see her due to legal issues.  Awesome.  The doctor did call and speak with Kevin and confirmed this so now we are very aggravated and frustrated to know that C has been reduced to nothing more important then some companies bottom line.  If we still want to see her EP then we should be allowed to, not be told that we cannot because then he would be breaking a non compete.  Really? 

So now we are kind of in a holding pattern again.  The doctors need to get all this stuff worked out since the cath doctor wants to get a good plan in place for her electrical issues before closing her fenestration.  He need to know what the EP wants to do about getting her off the Amiodarone and onto something safer and whether or not he wants to do another EP study.  Once the fenestration is closed then the EP doctor loses his good, easy access to the atria where all of Cs problems exist.  He could still get to it if he has to but the cath doctor wants to make sure all this other stuff is one prior to cutting off the access. 

The good in all of this is that C is still doing well.  So well in fact that she is back to her old, crazy, wild self.  She runs and jumps and plays hard with her brothers.  She adores the "school"  she gets to do with her Pre-K teacher.  She is really making improvements with her speech thanks to her speech therapist.  I can get her to consistently say "I love you" now and it is just so cute.  Although she is still not eating she is still interested in food and drinks and appropriately uses a fork, spoon and cup.  She loves mimicking all of us, especially me and will do girly stuff like brush her hair and put on make-up.  She is such a little love and brings so much fun and lightness to our house.  I am so very glad she is her normal again.  Although I am not at all looking forward to sorting out all this cath stuff, changing her anti-arrhythmia meds and putting her through two possible caths I would be super glad to get her off this oxygen so she can really enjoy all the things she loves, like going on the boat, swimming, jumping on the trampoline, the swings and slides at the park and generally just chasing her brothers without getting winded and without having to drag stupid oxygen tanks with us wherever we go.   


Sharron Johnson said...

Thanks for updating us. I think of you guys often. Prayers still going up on your behalf...

Keysgal@QuietWater said...

After you told me about the doctor visit at lunch that day it was like some weight was lifted off my heart. While I know there are still procedures to be done and a long road ahead I am so glad to hear some positives for a change. I is SOOOOO good to see C back to her old self. Love her giggle and smile and I love her.