Jonah's Special Need

As you all know, Jonah has a heart condition.  I mentioned in an earlier post that we didn't want to talk about it much because we don't want it to define him.  While that is still true, I don't want to not talk about it and miss out on helping someone who might be going through the same thing or something similar.  So here is what he has:

3 congenital (which means it was present at birth) heart diseases:

Double inlet right ventricle
Pulmonary artresia
Patent ductus arteriosus

Here is what we know from what has been explained to us and what our non-medical minds can understand.

He only has two chambers in his heart instead of four and one of the chambers is significantly larger than the other.  His arteries and ventricles are also in the wrong spots.  So basically his heart is working faster and harder than most.  It is working double time.  The blood that comes in from the body gets mixed up with the blood that comes in from the lungs that needs to go out to the body.  So to back up for a minute to those of you (and me!) who haven't studied this stuff in years...here is what the heart does:

Blood comes into the heart that needs oxygen.  That blood is then pumped to the lungs to receive oxygen.  Then it goes back to the heart to be pumped out to the body. 

So all this blood is getting mixed up together and that is why sometimes his complexion apears blue.  The heart has pumped out blood that has no oxygen in it. 

He had mulitple surgeries to correct these problems.  For those familiar with these conditions, he has had a Glen surgery.  Which gave him a man-made (gortex) artery.  He still needs surgery for a Fontan which is another man-made artery.  With these two surgeries the blood that is supposed to come into the heart to be pumped to the lungs for oxygen will go straight to his lungs and bypass the heart altogether!!  Crazy!!!  I still can't wrap my brain about that.  That sounds insane...but it works.  Our cardiologist says that blood is lazy and if you make the route to the lungs the easiest it is going to go that way.  So on the other side of this...we have to make sure his lungs are clear.  So getting him to the doctor as soon as he shows signs of congestion is key. 

On top of all of this...he has situs inversus, which means that all of his organs are on oposite sides of his body.  Not that big of a deal, it just adds to his complexity. 

We went to the cardiologist the Friday after we got home.  It was a LONG morning.  But they were so nice there and they worked with us on everything because he wasn't showing up on B's insurance yet.  Which meant that our doctor couldn't put in any orders before hand.  So basically we showed up at the hospital and they worked us in, added us to the system, and basically changed everything to make sure we got what we needed.  Our cardiologist even asked one of the nurses to just stay with us the ENTIRE time!  The worse part was the echocardiogram.  Because he is so complex, they had to really search for things and figure out what exactly was going on in his little body.  It took an hour and was very uncomfortable for him.  Overall he did extremely well.  Our cardiologist said there were no surprises because the information we received before we got him was so good.  She didn't change any of his medication because it is working for him right now and now isn't a good time to experiment with his medication. 

Speaking of medication...he is on four different kinds plus a multi-vitamin.  I give him his medication three times a day.  What I have to do is crush his medicine and disolve it in water.  Then I have to extract a precise amount and give it to him in a syringe.  I was using a VERY sharp knife to do this until I researched pulverisers!!!  And here is what I got on Amazon (it was twice as much at Walgreens).

It has saved me a lot of time.  So if you need to crush up pills consider spending $6 and ordering this.  Our doctor has given me perscriptions for some liquid for two of the medications, but she told me how she hates to just throw away medicine when there are people around the world who can't get medication.  So I'm going to use the medication that the people in Hong Kong so kindly GAVE us.

Both our doctors (cardiologist and pediatrician) took a few moments to just stare at him and observe him.  They couldn't believe how great he was doing.  He should not be as healthy or as smart as he is!!!!  Our social worker thought the same thing.  We all think he is something extraordinary!!

If you didn't catch the part where I said he needs the Fontan surgery...that will probaby be done this summer.  We are of course scared about how this open heart surgery will affect him, but we are putting it in the Great Physicians hands and we are praying He will continue to guide us in deciding what to do!  He has guided us and Jonah this far and we know He will be faithful no matter what the outcome is.  We continue to praise Him and thank Him every day for this precious gift.  Please pray with us for these medical decisions that have to be made.

Thank you all for your continued support, love, and prayers.  We couldn't do this without you.

Katie