Friday, December 7, 2012

Update and our big decision

Sorry for the long wait on the update.  The last few days have been very emotional and the last thing me or Tim really wanted to do was write about it.  However, I really want it written down so we can remember it all.

The last thing we talked about was getting his CATH procedure done.  This was done on Tuesday. This procedure is when they take a catheter tube and put it through a large vein in his leg.  They run it all the way up to his heart where they release a dye and they can see where the blood flows.  They can also measure pressures in different parts of the heart and vessels surrounding it.  This information was the last piece of the puzzle the doctors needed to figure out the best way to move forward.

On Wednesday, Joshua was moved out of the CICU and up to the floor.  This has been nice, since they are not as strict with visitors and we have a little more room to breath.  The only reason we are still in the hospital now are feeding issues.  We are working with him on that.  He needs to be taking about 65cc (I think it is about 2 oz?) of breast milk at each feeding.  Right now, he can handle about 10-20 cc (about 1/3 of an oz) by mouth and then another 35-40 by feeding tube.  We will work more with him over the next few days and hopefully get home soon.

Now, for the really hard update....once the doctors got all the pieces to the very complex puzzle that is our son's anatomy, we anticipated them coming to us and telling us what they thought was the best way to proceed...then we would simply tell them that we agree and move forward with that plan.  What we did NOT anticipate was having to make a choice, a very difficult choice: To operate or not to operate.

There are several issues with Joshua's heart, and all combined, make the surgeries very high risk and very complicated.  The first surgery would most likely be at Stanford if we chose that route.  The surgeon at Stanford is the best in the world for the procedure that needs to be done.  He's done the most, but not as complex as our little guys.  He's only operated on about 14 kids in the last 25 years with what our son has--6 of which are still alive.  There isn't much information on how to treat this the best.  And this is just the first of many surgeries he would need. On the other hand, if we simply felt him alone, there is a possibility that he would live a relatively long life, but not necessarily.  He could live 2, 5, 10, 20, maybe 40 years...we just don't have any idea. What makes it even more difficult is that half the cardiologist say not to operate, the others are saying it's the best option.  The vote is very split and ultimately, it comes to what we decide.

We have been relying heavily on our Heavenly Father to help us make this extremely difficult choice.  We went through a session of the temple this evening and Tim and I felt some very strong promptings, but we still plan to get as much information as possible.  In the mean time, we are soliciting the prayers and faith of all our friends and family at this time.  We are going through a lot of turmoil as we try to make the best decision for Joshua and for our family. 

Now, for tomorrow, Joshua gets another test done.  This test will tell us if his stomach is on the wrong side and if he has mal-rotation.  Mal-rotation (i'm not positive on the spelling) is when the intestines are not rotated correctly, thus a kink in the intestines becomes much more likely. (I think of a garden hose when thinking of this concept).  If there is malrotation, we would have to consider a surgery to fix that as well, depending on the severity of it.   

The doctors are great here and we feel very supported from all sides--family, friends, coworkers, medical staff, and of course, the Lord.  Again, please keep little Joshua and our family in your prayers.  Thanks for everything!!

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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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