The "F" Word

Last Monday was Stephen's 6 month heart check-up.  Nothing big, just an EKG and cardiologist appointment.  And then it happened...his doctor dropped the "F" bomb.   I knew the dreaded word would come up sooner than later...but I still expected it to be later.   Stephen is just about ready for the Fontan, his third open heart surgery.   Our hospital goes by weight (15 kilos) and Stephen is currently at 14.1.

I have sat here for a week trying to write a post but every time it gives me a headache and I just stare blankly at the screen.  My heart (and my head) are not ready to go there right now.  I cannot bare to think of the reality that awaits him so instead I have checked myself into a different mode...research mode.

While our hospital and many other centers base the timing of the Fontan on weight, I have been, and will be continuing, to seek second, third, fourth and fifth (if needed) opinions.  Without getting into too many details (I am exhausted with it already) the Fontan comes with a list of risks and complications that are depressing to say the least.  Since our first appointment at Rady's, while I was still pregnant, we were told that the 3rd surgery begins a "time clock" on the liver.  While it is beneficial in raising oxygen saturations it can be hard on other organs, particularly the liver, and I am not sure I am ready to hit "start" just yet.

While Stephen is thriving, and showing no current signs of needing the Fontan, I am questioning the timing issue.  Our doctor is thinking a heart catheterization procedure this summer and open heart surgery early fall.  I am having a hard time with this.  Not only because I can't imagine handing my child over again but because I am not sure now is the best time Stephen.

The weight of this decision is currently is too much for me to bare so I am writing and asking you to pray for Joe and I as we gather information to make an informed decision.

This week I had the pleasure of speaking with another cardiologist in Hawaii who tends to believe in putting off the surgery as long as the child's sats and energy are stable.  He knew talking with him would as he said "muddy the waters" but I am so glad I did.  The reality is we have 2 sub-optimal (at best) options and we need to weigh the benefits of going ahead with the Fontan now with the risks...even if they are down the road.

Thankfully no decision needs to be made now.   Our cardiologist is expecting us to call in June to discuss the matter further.  Until then I will be contacting other doctors on both sides of the fence to gather as much information as I can and seek prayers for wisdom and guidance before we make this awful decision.

Please pray for peace and clarity.  Even if we go through with it this fall I want to have peace that it is the right decision for Stephen and not just because he has gained enough weight to be a candidate. While I know it will one day be inevitable this mommy needs to take the time now to diligently research and pray...and ultimately surrender and trust God.

I truly thank each and every one of you who prays for our son and our family.  May God continue to guide us and use our lives for His Glory.

"Trust in the Lord with all your heart

and lean not on your own understanding;

in all your ways submit to him

and he will make your path straight"

P.S. 

 Now that I got this heavy post out of the way...I hope to follow with some 
more lighthearted updates soon!

Love,

One Blessed Mommy