Joey’s Heart

Joey’s Heart

There is so much to say about Joey’s heart.  So many times I have logged on to Facebook to provide a heart update, and I get overwhelmed.  How is it possible to put such a BIG thing into just a few words.

So I’m here, with info for YOU.

Our little guy has got a unique heart.   He has an Unbalanced Complete AVSD + – a hole between his atriums, a hole between his ventricles, and a nubbin of a right ventricle.  The “+” holds all of the extras, like a tiny tricuspid, etc.

It kind of looks like this – see that big hole in the middle?

uvsd

source

Many baby’s born with T21 have heart issues, but not like this.  Our cardiologist’s office has not seen another baby like him, they haven’t had this special combination in their practice.  They have been so kind to us, and incredibley supportive, offering us the best course that they know – the path to a Fontan.  A path that typically involves three open heart surgeries and may create a need for a heart transplant in the distant future.  This procedure has been around for 30+ years and works great for a large population.  We, unfortunately AND fortunately, are not part of that population.

I am no doctor, I am no scientist, I am a mother who asks a lot of question.  A LOT OF QUESTIONS.  The problem for us with the Fontan is that it increases the risk of pulmonary hypertension…the trend for those with T21 is an increased risk of pulmonary hypertension.  You put a straight Fontan and T21 together and you end up with a very high risk of mortality.  A  lot of these kids don’t make it to kindergarten.

I want Joey to make it to kindergarten.

I am selfish.

That is why we went to Boston, and why it was such a big deal.  He was evaluated to see if he might be a candidate for a different procedure (again, multiple surgeries) that would decrease the risk of hypertension and possibly set him up for a heart repair.  So instead of the work around, we may be able to get his ticker functioning a bit better.

So, what’s next?  We wait.  We wait for the level of O2 in his blood to decrease, essentially for him to turn blue again.  Your O2 level probably runs at 99-100%, Joey is running at 68-77%, he looks blue to me all the time.  It’s just the way his body is running right now.  What I am supposed to look for are extremely purple lips, or him turning grey again (that is what prompted the first OHS) – so I’m on constant alert.  AND, the doc doesn’t want a call if he just has moments of purple lips (which happens) but when he’s like that for an entire day or two.

Yikes.

It’s scary stuff.  Boston is saying that if we don’t report anything major by mid August, we’ll schedule surgery for mid September-ish, when he is 6 months old.  They’ve given me a 2 week post op estimate, so we will be out there for a while for both the surgery and recovery.

Wow.  Yup.  This is where we are – and as I keep saying, we have some amazing challenges right now.  We are blessed beyond belief, we have him here, teaching us every day.

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6 thoughts on “Joey’s Heart

  1. You all have a huge hill to climb and I do wish for the best. Someday I would like to hold him and with you all working so hard for him I believe that will happen. My heart is with him and you. I love you.

  2. I have been following your store since pregnancy and I am in awe of your strength. My baby was diagnosed with a rare, serious, but eventually curable disease when she was 9 weeks old (a very different situation, I know) . We spent a good portion of our summer in the hospital with her and lots of intensive home care. Of course, in that mode we think a lot about our babies, but we also need to take care of ourselves. I know you have a lot of support around you, but if and when you need a little more, even if it is just a walk with our babies, please feel free reach out to me. Love and Light to all of you.

  3. Rebecca, you and your family amaze me especially little Joseph. Thank you for sharing your journey with us it is an inspiring story filled with love, strength, and faith. I am so glad that I will see you both this weekend! Sending you lots of love and healing thoughts!!

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