1/26/12

Cardio updates

Yesterday morning Carla coughed up yet another cast, and it was a bit on the larger side, which of course brings back all of those helpless feelings of the last year.  We had our cardiologist appointment set for 12:45 but they had a cancellation, so we were able to get in about an hour earlier.  First we went to x-ray, and I am glad to report that the doctor said that her x-ray looked better than the x-rays in December.  The December x-rays showed some indications of casting, but the one yesterday looked much better.  So, that is good news.  Then we were off to echo.  Her echo looks unchanged, which is also good, because her function has not decreased and her fenestration is still open.  So, the question would be why the casts then?  The answer I was given is that she has a failing Fontan and the casts are an indicator of that.  It is so interesting to me that her heart function can be good, but her Fontan is still failing.  She has never had a good Fontan though, I'll admit that.  And while we are admitting things, we are lucky that she made i through the Glenn, as her function was not good at that point, and we are also lucky that her surgeon even went forward with the Fontan when he did.  Because, her pressures were high, on the verge of too high...and pressures have seemed to always have been the issue with Carla.  So, having gone through with the Fontan we were able to put off heart transplant for 3 years.  But, we have had nothing but problems since Fontan and I am looking forward to a time when Carla is blessed with a whole heart.  And, I am so thankful that she has been strong enough to power through and recover from all of her Fontan complications.  Her oxygen saturation level was at 79, which leads me to believe that a person's body adjusts back to their baseline after an altitude change.  We are going to incorporate an albuteral inhaler in to her daily routine, instead of just when she is sick.  So, that is good too.  The doctors are going to discuss listing her a little differently, so that she gets more offers, they are also going to discuss whether or not we should be treating her with meds to bring down her antibodies.  They had come down in November, but then were back up again in December and now are back around where they were in November again.  This still leaves her with not a whole lot of matches, but it is good to know they came down again.  The last thing we did yesterday were Carla's Synagis shots.  Two shots, at the same time, one in each arm.  Poor baby! I had hoped that she would never have to endure the horrendous pain that is Synagis ever again.  When she was a baby she used to get so upset at the doctor's office during her regular Synagis visits, that she actually threw up in the waiting room towards the end of her Synagis adventures.  Unfortunately, RSV is what revved up the Plastic Bronchitis last March ... and had she not had RSV she probably would not have ended up in the hospital for 9 weeks and on her death bed for weeks.  So, we have to resort to using the dreaded Synagis shots to keep the RSV away.  She cried and hyperventilated.  But, the transplant nurse was so sweet and brought her a beautiful stuffed animal, and stickers....and Mommy took her to McDonalds afterwards.  So, at least she got treats for her pain.  Rewards are important.

In other news...the slide shows at the bottom of my blog will be disappearing in March because the Slide web page is going away.  Because of this I am re-doing all of my slide shows.  I have re-done a couple, so now they have music and I am really proud of them.  If you want to watch, just scroll to the bottom of the blog and you will find them.

Love, Jen

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