The Journey of a Sweet Little Boy and His Special Heart

Saturday, October 26, 2013

Surgery Date

I have sat down at least 10 times to write this post and I just end up crying.  If Brad was writing it, you would have dates and schedules with nothing else.  If that is all you want to know, skip down to paragraph 3.  Otherwise you get my LONG version.  

We have had a lot happen in the last couple of months.  To start, Logan's cardiologist left our local hospital in July so we have had to start over with a new doctor.  That has been hard.  It seems like every doctor has a different opinion and way of doing things.  I don't think one is right and the other wrong, but it puts a lot of pressure on Brad and I as Logan's parents to try to make the best decisions for HIM.  We knew Logan's next surgery was just around the corner, and his previous doctor knew that too.  I think we were all just trying so hard to let Logan's heart last as long as it possibly could before needing to go through this again.  When we met with his new doctor Brad and I both left the appointment with the same feeling that it was time, and we couldn't put surgery off any longer.  So Logan had his pre-Fontan cardiac cath in September.  Everything looked good.  They coiled off a small collateral vein, and said his pressures looked good and he was a candidate for the Fontan (his next surgery).  

We had planned on staying here in Utah for this surgery, but that is no longer the case.  We will be going back to CHOP (Children's Hospital of Philadelphia) on December 26th for Logan's Fontan (we will fly out the 26th, have pre-op on the 27th, a cardiac MRI and cath on the 30th and surgery the 31st).

I say that it is up to Brad and I to make hard decisions, but the reality is we don't make those decisions on our own.  NOT A SINGLE DAY goes by that we don't pray for guidance in raising our children and particularly for Logan's medical care.  We pray for guidance in finding and talking to the right doctors and in every decision we make for him.  Things have fallen into place and it has been confirmed time and time again that having the same surgeon complete this surgery is the best decision for Logan.   I wish this wasn't something we even had to think about, but it is our reality... it is HIS reality.

It has been a process for me in getting to the "okay" point with everything.  The timing is not ideal.  Who wants to leave the day after Christmas, heck who wants to do this at all.  But it is right, and I would figure out a way to fly to the moon for my child if that is what he needed.  I have been trying to "plan" for everything... so much so that I think I might give myself an ulcer!  It seems like when I don't have control of things like the timing (or the fact that he even has to have this surgery) I completely obsess over the little things that I do have control over.  The other day I was stressing out about what size shampoo bottles to pack because last time we ran out 3 times (I took the travel size, when those ran out I bought a little bigger size thinking there was no way we would be there that long, and ended up having to buy a 3rd set).  SEE!  Completely rational to stress about right?  And how in the world am I going to take all 80 of Logan's cars with us without going over the weight limit on our bags!  I might need to paint my house or find some major project to keep myself from going insane the next 2 months!

It will all work out, right?

So now addressing the question so many are asking, "Why fly clear across the country when we have  a great hospital here locally."  Here you go.... Not only did Logan's cardiologist leave Primary Children's, but the surgeon that performed his first surgery as an infant also left Primary Children's.  I NEED to feel like someone has a vested interest in my son's care.  His poor little chest has been opened up 3 times already, I would like the 4th time to be by someone who knows HIM, who has been in there and knows what is going on.  Since we attempted the full repair to give him a 4 chamber heart and that didn't work (his little heart just couldn't handle it),  his Glenn was not a cut and dry Glenn.  His new doctor, the medical advisor with our insurance provider, and the doctors at CHOP all feel like Dr. Spray (his surgeon at CHOP) needs to be the one to complete this surgery.  Dr. Spray is one of the top surgeons in the world.  That is why we go when they say they have a spot for us, even if the "date" is not ideal.

But really, the date is working out to be a blessing.  Flights are cheaper the day after Christmas, the Ronald McDonald House might not be as busy with the holiday so our chances of getting a room there is more likely.  January is Brad's slow time at work so it will be easier for him to manage his work remotely.  My parents don't have any trips planned the month of January so Ashlyn and Tanner don't have to be passed from house to house.  They are excited to have Grandma and Grandpa in charge again.  They have already started making plans of what tricks to play on Grandpa and what they are going to talk Grandma into getting for them.  I don't worry for a minute that they won't be taken care of.  I KNOW I will miss them like crazy, and I KNOW Logan will miss them like crazy too, but we are hoping this visit will be short and sweet and we will be home before we even have time to miss each other. 

Thank you to those who love and support us.  Thank you to those who deal with my random tears and let me just talk or in some cases not talk.  I know we will make it through this, and I know we don't have to do it alone.

He is ready to run and chase the birds and forget about if his oxygen hose is long enough.  
I love this little boy!

2 comments:

  1. Oh Heidi!! Prayers for you! He really is the cutest faced little man ever! I wish I could fast forward for you to when he is all recovered and home playing again. Let's do that! Big hugs to you!

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  2. Thank you for sharing honestly and openly. My last blog post has so many similarities to yours. We still don't know when the Fontan will be for our son, but the unknowns and the burden as mom and dad I can so, so relate to.

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