The day we got Bodie's diagnosis, I feel like I took a deep breath and have been waiting to exhale since. The Fontan has always been that moment where I envisioned I'd get to exhale, the finish line of a very long marathon. One after which I could tumble to the ground, take a huge exhalation and relax for a good, long while (although it is not a permanent solution, if all goes well, the Fontan should make Bodie comfortable enough that we get a break from anticipated interventions for a good while).
That moment of exhalation should have come tonight. But if you are Facebook friends with me, you know it's not coming for another 2 1/2 weeks. :-( We got the call today and our new surgery date is Thursday, August 15th. That was the first available date that both Bodie's surgeon and the Electrophysiologist were available.
Warning - pity party full steam ahead. I'm sad. I'm frustrated. I want to throw something and just sit and cry. Actually, I did (cry, not throw something) - I may have said something like "You CAN'T do this to us!" in between sobs to the kind scheduler who clearly drew the short straw and had to call me with the news.
I just want to be PAST this surgery and focusing on recovery. It's hard for me to see friends of ours who had their surgeries scheduled after our initial surgery date recovering and going home, no longer having surgery looming over their heads. We planned for surgery to be mid-July (and then end of July) for a reason. Because it fit best into our schedule. It would give us time to get Sierra squared away and give Bodie enough time to recover before going back to preschool in September. My in-laws drove to town from Reno to help with Sierra. My best friend Val flew out all the way from South Carolina to help me. Dusk and I had both given our work notices and had the next 2 weeks off. So right now, we have a very full house when we don't need it. It's fun, don't get me wrong, but not what we planned, that's all! By August 15th, my in-laws and Valerie will have gone back home and Dusk will be into crunch time at work. Poor Bodie will have been in isolation for over a month. It stinks. We'll be without help for Sierra. And Bodie will now have to miss the entire first month of preschool with a new teacher (sternal precautions will keep him out for 6 weeks post-op). It sucks all the way around.
This is no one's fault and I get that. It's not the surgeon's fault, who I am certain did not want a family emergency so urgent that he had to cancel surgeries to attend to it. I can only imagine an event of that magnitude and would ask you to keep him and his family in your prayers. It's not Bodie's Electrophysiologist's fault who bent over backwards to get everything scheduled for the 1st day he was back from vacation only to walk into a hailstorm of craptastic events. It just happened. Things just happen. But even so, it's frustrating. The parent in me just wants to stomp my foot and complain about how unfair it is.
But I am SO grateful that we KNOW God is in control, that we can be rest assured that He knew this was going to happen this way. I cannot help but wish He had given me a little more notice so that I could have planned accordingly, but that apparently wasn't in the cards. Clearly a lesson in patience for me (if you know me, you know that patience is SO not my strong suit). But I am so incredibly grateful for His promises to provide for our family and for our son. Because of that, I know my pity party will be over when I wake up tomorrow morning. I know I'll be able to shrug it off and roll with the punches, because He has something better in store. Obviously, Bodie's surgery date was never supposed to be July 15, or July 29 or even August 1. Let's all hope for August 15. Pretty please?
And, in the meantime, I'm going to try to enjoy a little more downtime with my favorite little dude.
When ShawnBear was diagnosed the surgeon was on vacation and wouldn't be back for a week. Seemed like the longest week of my life. I know rescheduling is so frustrating, but knowing you from you posts how much faith you have I know you be a little better in the morning. If you need anything please let me know . I will help anyway I can . Hugs . I will be praying for comfort for you and your familyReplyDelete
I can't even begin to tell you how much Bodie's story has inspired me. He is such a strong little boy with all that he has been through, I think he gets it from his mom! :) I will be back from vacation by the time he has his surgery so please let me know if there is anything you guys need, whether it's someone to hang out with Sierra or just someone to come say hi to Bodie in the hospital I am more than happy to do anything. Many, many prayers your way!ReplyDelete
I hear you on the "waiting to exhale". I've always thought that after the fontan, we can find some sort of "normal." Well as normal as one can be. I dream of getting off meds and oxygen tanks, attending preschool and climbing staircases with ease. Willa has not been able to attend school pre-fontan. We found one for the fall, enrolled and I hope they let us keep our spot. If we get postponed again, I fear we will lose it. It's really hard to let go and roll with the punches sometimes. But in the end, I'm sure it will all work out. I find the trick is to just stop thinking about it. ; )ReplyDelete
Love you guys so much. Sorry you are having this scheduling nightmare. I know how much that stinks. If it makes you feel any better we have had the Fontan and I am still waiting to Exhale. This stinking fluid is just such a pain but I know it will come off in time. You are an amazing, strong woman and I can't wait to be able to congratulate you guys on being Post-Fontan. Until then feel free to write and vent to me anytime. <3 Hugs!ReplyDelete