Last year, all of Houston was in a drought. A few months ago we got out of the severe drought conditions with some good rains, but recently rain had been scarce. This whole week we've been in the hospital, the rain has been non-stop! This morning we woke up to REALLY dark skies and good stormin' outside. At 8 when the sun is usually getting high in the sky, there was little light to be found. Everyone that comes in has an umbrella or a wet shirt (unlike the movies, you DON'T want to see these wet shirts).
We had a typical morning, meds and vitals through the night. I admit the fatigue has overcome the edginess to the point I don't wake up every time they come in to check vitals. This is leading to more sleep and a much more tolerable day. We still have to get up and wake Cannon up a couple times, but it's much better as he gets further away from surgery. So if you find yourself in this situation, bear with it... it gets better. The one trick we've found that really helps all this is to wait for a good time of night when your patient is falling asleep or has just fallen asleep. Then have the nurse come in for all the meds possible to be given at that time, and have the PCA come in and check vitals one more time and ask them to wait as long as possible until the next trip. We got this just right one night and had 5 hours uninterrupted. A new record!
One glitch we had this morning was giving blood. Although Cannon has an IV in, it's really only good for administering meds. Drawing blood is a different story. Yesterday Cannon did great! He sat there a gave a whimper as the needle went in, and it was over. Today, the nurse couldn't find a vein that was giving up the goods. So there was some digging and prodding. I'm sure we've all been through this a time or two, but it's tough for a 6-year-old. After digging in three places, the nurse still couldn't find the blood. We asked him to try the IV even though they usually don't give any blood. What do you know, it worked. It took a flush and some patience but the blood came.
We had all the same staff visits as usual, typical busy morning. The problems we're dealing with are fluid around the heart and he just can't pee enough. The fluid around the heart is OK as long as it doesn't increase, so we'll have an echo tomorrow to find out if it's increasing or not. Regarding the pee, we've been tracking the volume of fluid he's been drinking from day one. He's always taken in a lot of fluids and he's taking more and more now, almost up to normal. But his output is tracking with his input. He should be putting out a half liter, but he's doing 20% of that, sometimes as little as 25mL. I think the problem is we've been spoiling the kid and giving him whatever fluids he wants. We don't usually spoil, the Bible tells us not to. But when you have a kid going through this, exceptions have to be made. EVERYTHING in their life is misery, and without some positives (getting what they want), you're just setting up for a fully miserable experience. Well, in this case Cannon likes Sprite. We've been giving him Sprite all the time and not enough water. Today we decided to force a ton of water down him, and Papa (Tori's dad) did an outstanding job getting this done. If you need someone to drive a task to completion, this is your guy. Between the water and a diuretic late yesterday, output started going up. Not where we want it, but getting closer.
When we started this little trip last Thursday, we got a room in the Marriot across the street. Methodist Hospital is one of my customers, I've been working with them for 5 years or so. This has proven handy. I can get us from the Marriot, through Methodist, into the tunnels and all the way to our room in TCH West Tower without ever going outside. We wanted this availability while Cannon was in the hospital, so Marriot was our easy choice. We'd checked in Thursday for Cannon's pre-op, had used it through Cannon's stay in the ICU, and the last couple nights hadn't used it at all. We went this morning and cleaned it out and checked out. I think we could have checked out a couple days prior while we were staying in the hospital, but we were so busy with visitors and doctors we'd never had a chance. After we checked out, we went to lunch while Cannon got some quality time with his Papa. They did some laps around the floor and played Playstation2 (the Playstations come with the hospital room and you just have to check out some controllers and games).
When we got back to the room, Cannon wanted me to play the Playstation with him. I asked the charge nurse for another paddle, they didn't have any. Why? It seems that when folks come to TCH for medical treatment, receiving the best treatment in the world isn't enough. Somehow they think they aren't getting enough for their dollar... or whatever the reason, folks steal the Playstation paddles. And instead of impacting the hospital, the folks that steal Playstation paddles impacted quality time with my son. If you ever stole something, there's a little twinge of guilt for you. I didn't get to play Playstation. Now I'm mad!
We had some of Tori's coworkers drop by this afternoon and bring some great goodies that Cannon will love to play with at home! We also had some good old family friends drop by to help the time pass by. Since we've been managing his pain well, Cannon has had an incredibly great attitude. Really a different kid. I'm waiting to see what happens when we get home and get off pain meds in a few days. That's when we'll see if this great attitude is just a result of being high on drugs!
We had a visit from the surgery team today from Tara. She gave us instructions on caring for Cannon once we get home. We realized this is going to be hard, but in a good way. Have you ever heard of a "chest cavity"? This refers to the box God built around our vital organs. It's made of the ribs coming off our backbone which wrap around from back to front and connect to the sternum. Our vital organs are protected from front impacts by the solid connection of the ribs to the sternum. That makes the solid "breastplate". For all practical purposes, a recovering open-heart surgery patient has no "breastplate". During the surgery, it's cracked open to allow access to the heart. At the end of surgery, they use stainless steel wire to "tie" the breastplate back together. They take a length of wire, go in through one side, behind the breastplate, back up the other side, then twist the wires together, and fold the twist down so they don't poke out the skin. They repeat this process like "bone stitches" the entire length of the breastbone. Makes for an interesting X-ray! Cannon has between 6 and 10, I didn't count when I looked at his X-ray. The bone will eventually grow over these steel wires, so they stay in place forever. Even in future surgeries, they'll just be adding wires. But even with the wires, Cannon's breastplate is still 'flimsy'. Any impacts to the chest could be quite problematics. Not just impacts, but excessive movements of his arms, or lifting weight. Basically, he can do nothing for 6 weeks from the day of surgery while that breastplate solidifies again. That's why this will be hard in a good way. It'll be good that he's going to want to be more active, and bad that we'll have to restrain that activity. That'll be tough.
As we watch Cannon improve quickly, we're amazed to learn that we'll be going home soon! Once they are satisfied with how much pee we have coming out, and verified that the fluid around his heart isn't increasing, we'll be outta here. Hopefully tomorrow! I have to admit there's a bit of comfort in staying here. Help is always a "red panic button" away. If something happens to Cannon's wound, or if he is suddenly wracked by uncontrollable pain, there's a quick solution. At home, we're a long way from help. I'm used to being able to fix anything; patch wounds, stop bleeding, make the pain stop. Tori and I will FEEL helpless if something happens to Cannon's chest/heart, but I know God will keep him safe. But even if he does fall, it would take some pretty special circumstances for it to be fatal or severely harmful. Doesn't help us much: we still feel like we're bringing home a piece of cracked glass that's just on the verge of breaking.
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