Since we've been in the hospital room (after ICU), we've started every day with drawing blood. Before surgery, this was a HUGE scary ordeal. Compared to what Cannon's been through up to this point, getting poked by a needle is now minor. Until yesterday, when the nurse couldn't find the vein and did some exploratory work with a needle. This morning, our nurse went straight for the blood but gladly attempted to do it via the IV. It took a LOT of work and patience on her part, but she finally got enough. She came back a few minutes later... the blood had clots and couldn't be used so we had to do it again. This time we had to put the latex band around his arm on bare skin to restrict enough (we've been putting it over his sleeve to keep from pinching... another avoidable owie). This got him teared up, but we eventually got enough blood out. But today should be the last day in the hospital.
We've been preparing to leave since yesterday because Cannon is doing so well recovering. Staff is telling us that we just need to get a final echo to make sure fluids around his heart are decreasing and not increasing, then go home. Tori took some time to pack up the room and get organized for leaving.
My parents got here about 9, our new daily routine. They had donuts and kolaches. Papa got here with Colton about the same time. We spent the morning on Playstation, watching cartoons, building Legos, going to the playroom. Mostly just waiting for the painkillers to show up, and to be ready for the long awaited "get-this-done-and-you-can-go-home" echocardiogram. We got the painkiller about 10 which was just in time, Cannon was starting to feel it. We got our echo appointment about 11. Got picked up by transportation and taken to echo, had a long wait of about 45 minutes.
In the echo room, our technician was quiet and diligent; they usually are. You have to be an expert to use that machine and to know what in the world you're looking at or for. I was studying the technician's actions and realized she was repeating the same thing over and over again, she was showing signs of stress and frustration. Cannon was completely still so I knew it wasn't something he was doing. Tori and I have seen this before.
When Cannon was a few days old and still in the hospital after birth, we didn't know he had any problems. A doctor comes by and does a thorough physical on all newborns. He told us that Cannon had a hole in his heart, but not to worry because many babies have holes in their hearts when they're born and they often heal on their own. We followed up a week later with a pediatrician, and the "hole" was still there. At this point, we're only going off what doctors can deduce with a stethescope, no further testing was done because he seemed otherwise healthy. Acceptable blood pressure, no blue fingers, no blue lips, etc... When the physician heard the hole still there, he referred us to a cardiologist. The cardiologist deduced the same hole, and ordered an echocardiogram. When we went to that echocardiogram, we thought they'd look inside, tell us it's a hole that'll heal in a week or two. Maybe need some meds.
That was our first of many echocardiograms. The echo technician began and it was clear she knew what she was doing. An echo machine is like an ultrasound machine: a screen to look at the images from inside the body, and a panel with a keyboard and a ton of other buttons. You can tell when a tech is good because they can navigate the hundreds of buttons on the machine without barely looking at them. You could just watch this girl work and know she knew that machine inside and out. But she seemed confused by the images of Cannon's heart on the screen. How can she know that machine in and out, and not know what she was looking at on the screen? As she looked at Cannon's heart on the screen, it was clear she was lost. It took a long time, and she eventually called the cardiologist in. The cardiologist came in, spent some time looking at the images on the screen, and said she'd have to get back to us.
So when an echo technician looks stressed and lost while they're looking at Cannon's heart, we get a little apprehensive. That's why I was apprehensive today when our tech was taking a long time and getting stressed.
Through all this, Cannon was a champ. He quietly watched Tom & Jerry on the TV while the tech did her thing. At one point he started playing with his hair with his right hand. The tech asked him to stop and he put his hand right down and laid as still as a board without complaint of how long it was taking. Then the tech moved the wand down below his sternum and pushed down and pointed it up to get a bottom view of the heart. Well this spot just happens to be where his central drain line was and there's a large hole stitched up where she was putting her wand. Cannon was trying so hard to be a good boy, but he couldn't stop the cry. He laid there crying silently while no one was looking. Tori and I tried to comfort him, but couldn't stop the pain. The technician realized she couldn't get the view she needed without causing considerable pain and gave up the effort.
At this point, the tech has spent a considerable amount of time looking around at Cannon's repaired heart. She tried to call another tech in for another opinion, then got a doctor in. It seems that there wasn't necessarily anything wrong, it seems she just wasn't confident she knew what she was looking at. So after a long trip to get an echo, we were back in our room.
We killed more time with family, and it didn't take long for the cardiologist to come in to give us the update on the echo. The fluids around the heart are increasing, and they can't let us go home like that. If the fluids continue to build, they'll put pressure on his heart and it'll struggle to pump blood. So our course of action is to start some diuretics that will help his body get rid of fluids... in summary, they help Cannon pee out the excess fluids in his body. Very common drug. Hopefully that means he'll pee off the fluid around his heart. Another night, maybe two. Guess we can unpack. Again.
So let's understand why, I don't want to worry that my kid is facing something severe. When a heart is in trouble, or works inefficiently, it pumps too hard, or too much, or too fast. Since it's a muscle, it grows when it's overworked. This was our concern with Cannon's heart. It was working too hard, even when he was at rest, to provide adequate oxygenated blood to the body. At 6 years old, it was just starting to harden and enlarge; Dr. Fraser verified this when he gave us the summary of Cannon's surgery. So now that the heart is repaired, it's not under as much stress and has shrunk a bit. This leaves a void around the heart, a void that the body decides to fill with fluid. If we can't solve this with meds, we'll have to have it sucked out with a syringe. That sounds as fun as pulling off your fingernails, doesn't it?
We're praying we can go home tomorrow. The meds won't solve this problem by tomorrow, but they seem to think as long as his vitals are still perfect tomorrow the heart is handling the fluids surrounding it OK and it's not an emergency. We have to come back next week for a followup anyway, and we'll have another echo then to make sure the meds are doing their job.
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