The first was when Benny had his G-tube put in last June. We knew it was really important for him, because he just wasn't getting enough nutrition and he couldn't have the tubes in his nose forever. But still it was a bummer to need another surgery, another hole in his body, another tube hanging out all of the time and of course, another stay at the hospital. I was trying to be positive the whole day but I was pretty bummed. Until...
...it was all over and he'd done great, didn't seem to mind it too much and really it did make life soooo much easier for him. He started gaining weight pretty soon and with occupational therapy coming every month he started eating on his own little by little and was actually making so much progress that the tube came OUT in December!!! Yeah! He has had a few set backs since then but overall he's doing great.
This is on my mind because Ben is having surgery next Friday to have his circumcision finally. It is out patient but it does have to be done under full anesthesia at Primary's since he is so grown up now (I guess the docs don't think that little one year old boys would hold very still while they snip around his diaper area.) Poor guy. But it's necessary, especially if you ask Cody!
Also I've been thinking about last June when we had the scariest phone call one afternoon after a long day at clinic. I had been told everything looked good while we were at the hospital, but that afternoon, we got the dreaded call that the cardiologists were pretty sure he was beginning to reject his heart. Aaaahhhh!!! I was shaking so much while they were explaining it to me on the phone...they'd looked over his last few echos and seen increasing changes...they'd been monitoring his blood work...but it all boiled down to the bottom line-- they were concerned enough that we would have to go back at 6am the next morning for an emergency heart cath and biopsy (where they take a small chunk of the heart out to test for rejection). You have to realize, those of you that haven't been through a heart cath with your little one (I am SO GLAD about that, I wouldn't wish it on anyone!), but it is SO VERY dangerous. I mean they insert the lines through his groin and push them up through his arteries to his heart, trying not to poke a hole and cause him internal bleeding. They have a camera on one of the lines that takes some amazing pictures and I think it's the second line that has the claw to remove a piece of the heart. They also placed a central line in his neck where they were able to get 17 tubes of blood and give medicines throughout the procedure. It took more than 2 hours to get the lines placed because his veins are so tiny and have been through so much. All during that time we had no clue what was taking so long and were terrified something horrible had happened. This was his first cath since he'd left the hospital and he had had horrible experiences the other times. Several times his heart had stopped completely and they were able to revive him using the paddles when he didn't respond to medication. Also they'd had to do an emergency ballooning of one of his valves once and that was so terrifying--the doctor gently tried to tell us that we may have said our last goodbye to him. It was horrible. But thankfully...
...that wasn't exactly the circumstance this time. It was a REALLY long day, and poor Ben was feeling miserable, but finally the good news came. No trace of rejection! What the doctors had seen on his echos was increasing shadowing and they didn't know if it was Coronary Artery Disease, Cancer or some form of rejection. What they found in the cath, thanks to those amazing pictures, was that somehow, in the few months since his transplant, he had actually grown a second coronary artery with lots of little spidery veins growing around it and it was producing the shadow. It's a little bit of a bizarre phenomenon, but may turn out to be a blessing later. Long story later, he was just fine and we were cleared to go home.
This is on my mind because Ben will be one year post transplant on February 5th and so he will have to have another cath and biopsy that day and then yearly after that. I don't have any reason to believe anything will be wrong, but the procedure itself scares me and tries my faith. Please keep him in your prayers that day if you can.
