It may be time for an update.

 

At the pumpkin patch, October

I know you can't believe that I'm actually posting an update!  Ha!  And some random pictures that are only related to this post by virtue of Della being in them!

First a couple of housekeeping items.  One is that I changed the domain and the description of this blog.  When I first began this blog I chose those based on Della's initial diagnosis.  Since that diagnosis was changed I've just been putting it off due to pure laziness on my part.  But since I wanted this blog to exist to potentially help others with children with similar heart defects I thought it was important to have all the titling correct.

Now for the actual update on Della.

Today we are almost 8 months post surgery. Della is 24 months old.  She is doing fairly well, though I have to admit she isn't doing as well as we had hoped.  For the first few weeks after the surgery we expected things to be pretty rough.  And they were.  Della was in a lot of pain from the incision and from the bruising where they had to spread her ribs apart. She was doped up on medication for the entire first 2 weeks post surgery.

We were told that the all the stitches used were the dissolving kind.  But the stitch that was where the chest tube was did not show any signs of coming out so after 10 days we had my dad cut it out.  (He was a medic in the Air Force so he knows what he's doing...don't worry! :) )  Then around four weeks post surgery Della developed what looked like a small pimple at the very top of her incision site.  We looked at it and poked at it and it seemed to be only mildly painful but it also appeared to be a stitch coming out of the incision.  When we called her surgeon he said that was probably exactly what it was and to just wait and it would pop out on its own.  And that is exactly what it did...eventually.  As in on July 4th! It finally popped out and with some luck that one little spot will no longer bother her as it has been (I think it must have just poked her just wrong sometimes).

With Daddy, petting a donkey!

The main issues we seem to be having with her are all related to her breathing.  We had such high hopes that this would be a fix it and forget it kind of thing.  Well, at least sort of forget it.  But as it stands right now we were off a little there.  Della still has very noticeable stridor (the gurgley breathing, it basically sounds like she needs to cough, but coughing does nothing to help her).  So she is still on Pulmocort twice a day which she inhales using a nebulizer. Right now she has a cold so she also is on Albuterol twice a day and we do chest percussion to try to help her clear the mucus from her lungs.  We also have a supply of Prednisone (a steroid) for if she gets a particularly bad cold.

In September we had a flexible bronchoscopy done at the recommendation of her pulmonologist.  This was to check out her airway and see if they could see exactly why she still struggles with stridor.  It turns out she has "significant tracheal malaise" right where the trachea splits to enter each lung.  Tracheal malaise is a fancy word that means her trachea is crushed and squishy right there.  It is really bad right above where the branches split and then the tube going into the left lung is ok but the tube going into her right lung is also crushed. 

So what does this mean?  Basically it means that she can't cough effectively.  Think of a cough as a violent wave that originates in the lower lobe of the lung.  When a healthy person coughs that way pushes all the mucus up and out of the lungs into the trachea and, with luck, out into your mouth so you can get it out of your body.  When Della coughs the 'wave' disperses and loses all its power at the site of the malaise. So she essentially never is able to clear her lungs. 

We have been so extraordinarily lucky because she has never had pneumonia!  But this does make our job this winter to keep that statement true.  She was also approved by her insurance company to receive the RSV vaccination as getting it (again) would pose significant risk to her.  We are very fortunate because it is so expensive (around $1000 a shot and she'll need 5) and insurance companies rarely approve it for kids over 2.  Thank goodness  her doctors were able to successfully appeal the original decision and demonstrate to the insurance that it was medically necessary.   

 

Della as Little Red Riding Hood on Halloween, with Mommy.

 

As for her heart she still has an ASD (atrial septa defect, or whole between the atria).  She had another echocardiogram at the cardiologist last week.  It appears that it is a tiny bit smaller than it was at her last appointment with him in May but that is to be expected as they close naturally the first two years of life.  But hers is still too large and the right side of her heart is slightly enlarged as well.  We will go back to him next November just after she turns three and he will look at it again.  He said there is a very small chance it could continue to close but that it's not very likely.  Probably we will be making a plan at that point to go in and have it closed.  This procedure will be outpatient and will be done with a catheter.  They may wait and do it after she is four as long as her heart is not getting more enlarged on the right side, just to let her get a little bigger. 

And speaking of her size brings me to the final point of the post.  Della is still very small.  It was her not growing between 12 and 15 months (at all!) that got her pediatrician worried and set us on the path to her diagnosis.  At 2 years old she is 30.5" and 23 lbs 6 oz (although the weight isn't entirely fair because she has  a full arm cast right now because she broke it!).  But she is on the chart for weight.  She is no longer on the chart for height.  She had gotten back on the chart post surgery.  So now her pediatrician is concerned again.  We will go back in 6 months and have her weighed and measured again.  If she stays on her curve, even if it's off the chart, then it's ok.  But if she has flat lined on growth again we will have to look at why.  Again. 

So excited watching the pig race at the festival!

That is pretty much it in a nutshell.  I know it's been so very long, it's hard to keep up with this!  I really admire people who find the motivation to keep blogs updated so well! 

*And a special thanks to Aunt Brie, who took all these pictures! :)