So we got the call today. The call from….scheduling. I knew this day was coming. But to hear a date. An actual pre-op, cath, and surgery date has literally made me sick to my stomach. The worst part…we have to be there June, 8th….his birthday. It’s like a sick joke. Having a very very hard day today.
Not to mention he has been very very blue this entire week. I thought to myself thank goodness we are going to be in Boston in a few weeks. Then to find out this afternoon it’s not till June.
I haven’t wanted to Pulse Ox him (check his O2) because honestly, I don’t want to know. But I thought since now it was going to be so long before his surgery I would look. Ugh.Ugh.Ugh. It said he was 65-70. I haven’t seen the 60’s in so very long. I feel sick. I rarely have a pity party for myself because Logan is the one that bares everything, what do I have to complain about? But today, I have fallen into self-pity, anger, frustration, and sadness. I am so pissed off that Logan has to be cut open again. It’s so unfair. So very very very unfair. I am at the same time fully aware of how lucky we are to live in a time and place where he can have access to the best care, I know all that. I just look at his sweet little face and his silly hair, and I just want to take his place so bad. I wish I could just go thru this for him.
I told our pediatric cardiologist when I was still pregnant that my absolute worst nightmare was to get him to be 2-3 years of age and then lose him. We can’t lose him now. I am so scared. Absolutely terrified. The only relief that I feel in all this is that we Dr. Pedro Del Nido. He could not be in any better hands. That is what I hold on to.
There are so many scary things about the Fontan. I don’t even have the stomach to get into right now, but it’s not just the surgery, there are all sorts of complications that can happen from the Fontan that are awful.
Just a really crap day. I had no clue it would be so upsetting to get an actual date.
The emotional stamina it takes to get thru all this is just staggering. I feel so beaten down. I feel like I have been punched, kicked, thrown in the street, drove over repeatedly by a dump truck…and now someone is saying to me, ‘hey, get up, we have to go climb mount everest now.’
I rarely do posts like this, I try to keep strictly to the facts about what is going on in our life. But this is the facts of our life. I was explaining to a friend of my how precarious Logan’s life is. I said its like being an Olympic Ice Skater. I feel like for the past 2 years we have landed triple axles, and now we are coming up to the last one….
The amount of time, research, and ABSOLUTELY meticulous care it took to get Logie to wear he is right now would really surprise most everyone. Logie didn’t get lucky, I fought like a crazed lunatic, to get him to the best surgeon/hospital that I could find that could fix him. I was told twice Logan needed surgery at a different hospital and only because of the meticulous research I had done, did I know to say NO to those surgeries. It’s because of me that he is alive. I know that and everyone tells me that. Well, what if I am missing something now? What if I didn’t read some new research? What if there is actually a center in Asia that could do better? What if we waiting a year or two more and there is some new technology and he wouldn’t need the Fontan? What if that surgeon in California that is growing stem cell arteries could do something for him? It is so much pressure. So so so much crushing pressure. I feel at my absolute very weakest and I am being asked to perform my last triple axle…. I am skating around that turn, slowing down to prepare…..