I haven't posted in awhile in hopes that my next post would be: bought airplane tickets flying home today! Turns out too many people were worried about Olivia. Everyone was right to worry, yesterday's cardiology appointment was a depressing one. The blood transfusion that magically saved the day is only a small band-aid on this gaping wound.
In order to understand we must go back in time: "Only 15% of HLHS babies have 2 superior vena cava's," Dr. Spray said pre-op. "There was no second vena cava, everything went fine though," Dr. Spray post surgery. "Theres a huge thing carrying blood right there," echocardiogram radiologist when asked if she still saw the extra vena cava. "It's just a big vein," said a cardiology attending. "Olivia's earlier cath's only showed it to be a small little vein," Dr. Schatner said yesterday. She then proceeded to explain (praphrashed in a mixed up incomprehensible way, but how I understood it):
The large vein has grown since her norwood on her pulmonary artery. It turns out it is growing and slowly it will siphon more blood from the direction we want the blood flowing. Meaning lower sats, until finally when she gets older it has grown so big that her sats would be at a very dangerous level. The only option is to do catheterization number 3 and coil off that vein before it gets too bad.
From my understanding HLHS kids on the path to a fontan circulation, which requires all 3 surgeries to complete, grow these tiny little veins along their arteries (or something like that). Sometimes these collateral veins take too much blood away from the fontan circulation that it gets very dangerous. Olivia has one of these veins that must be coiled off for her to survive now. Her last 2 catheterizations went through her leg, and the last one it took them 2 hours to find her pulse in her leg (very scary). This cath will go through her neck. I haven't had time to research going through the neck vs. the femoral leg artery, but the neck sounds just as scary. I guess the only good news is that we won't have trouble finding her pulse in her neck after the cath.
Typically CHOP likes to wait 6 weeks to bring a post-op child to the cath lab, but the great Dr. Rome doesn't think it is necessary to wait. The greediness to want to get home inside of me is happy, but I am still worried maybe it is too early. I told them we can wait or we can do it now I would trust their opinion. Right now I am waiting to get the call for them to schedule it. If she gets her cath friday and everything goes great, we still might be able to get home before Easter, which would be so amazing.
If that wasn't enough her eating of the enfaport is random. Sometimes she loves it, other times she hates it. Sometimes I have to fight with her to drink it, and other times she'll just drink half of what she needs. With all the diuretics she is on, she needs to get almost 670ml's a day to hydrate and get some nutrition from her formula. Yesterday before she went to bed we were at 450ml's. I figured I would feed her at 10pm, and she took 4 oz, but I didn't think she'd wake up at 2am and 5am to get 8 more ounces. At 5am she didn't want it, but she woke up crying like she was hungry, after a 10 minute fight she took 4 ounces. This morning it was a fight to take 2 and a half ounces. If she isn't careful she will end up in the hospital before her cath and maybe even an ng-tube. AHHHHHHHHHHHH! I just want to man scream.
To describe how I feel right now can be summarized as depressed. In detail I am excited to be going home, helpless about this cath, mad about her feeds, empty from missing my other kids so much, lonely without my wife who always knows what to do. It is like that empty hopeless lonely feeling you get in the pit of your stomach when everything you wanted behind Door #3 turns out to be a donkey wearing a sombrero with a cart full of donkey crap and the audience is laughing at you. If I was a lady i'd be crying myself to sleep every night, as a manly man the tears just don't come, so it just feels like emptiness.
The good news is that if everything goes perfect, she eats well, and her pulse comes back in her neck we might just be able to get home April 4th. Anything past April 4th and the emptiness will be so empty that it could fill a bottomless pit.