After sleeping all day yesterday and being removed from the narcotics, we knew Cannon was relatively sober, meaning his sleep last night would be relatively normal and any sound could wake him up. Thus, we would not have the priviledge of a hotel stay last night! Tori and I agreed to split the night up, I'd take till 2:30, then she'd take the rest of the morning. She went down to 17th waiting room to sleep on a recliner while I stayed with Cannon. Poor girl is 33 weeks pregnant, I doubt that recliner was much fun at all!
Cannon was in a great mood... all night (at least during MY shift). From 11 PM to 2:30 AM we watched a couple movies, talked about his surgery, what he remembered and didn't remember. He snoozed off and on but didn't do any real sleeping since he'd slept all day. He wasn't on any narcotics to sedate him, but his pain meds made him sleepy. Made for interesting conversation... like talking to a narcoleptic.
After complaining about his "weewee" hurting, I asked the doc if the cath could come out soon. I was thinking "the next morning" or "tomorrow afternoon". They were thinking "Now". As soon as the doc left, the nurse came back to the bed with a kit and at about midnight we started with removal of the cath. I was sure to warn Cannon that what was about to happen wasn't an option and was going to hurt. He was trying to gauge how bad it would hurt; he asked if it would hurt worse than drawing blood. I said I didn't think so. Ooooops! I was way wrong! On the first tug he was crying and said it hurt way worse than drawing blood. On the second tug he asked what was in him that had a knife on it. On the third tug he asked if it was a bullet in his weewee (you can't make this up). Of course, we were constantly reassuring him it was just a tube. When we finally got it out, he asked how bad he was cut and how much blood there was. We told him to look and he was amazed he was clean as a whistle with no blood anywhere. He actually recovered very quickly from this and was glad the tube was out. The funny part is he's still not able to stand or walk, but somehow he's gonna pee!
At 2:30, Tori came up from her recliner nap and took her turn. While she was there, they tried to give Cannon Tylenol for pain between shots of morphine. He threw all that up on his favorite blanket making sure that's he'd stay in pain and wouldn't have his blanket for comfort. In his state of mind, the blanket wasn't a huge issues, but the pain was keeping him up. All night. Since he was awake, they took the opportunity to remove the arterial lines in his wrist and ankle. They also quit allowing fluids at 4 in preparation for having his last two chest tubes and the pacemaker wires removed. When I got back at 6, he was at the end of a 30 minute nap. With all the beeping machines and further removal of hardware, he'd probably gotten a couple hours sleep total all night.
Sleep or no sleep, the show must go on. Shortly after I got there at 6, we had another encouraging milestone: Cannon got to get out of bed! It was a short trip to a chair next to the bed. The trick is he can't use his arms. This applies to anyone who's had their breastbone broken to allow access to the heart. Engaging the arm or pec muscles will pull on that breastplate and the wires holding it together. That also means a parent can't use the kids armpits to pick him up. THAT'S a tough habit to break! I got a quick lesson in handling/moving/carrying and we got him situated in a chair. He swallowed the pain well and got into the chair and sat there peacefully and contently. This was his first time off his back since Friday (it's Tuesday). It was great to see!!
Cannon at this point is getting really thirsty. Because of his heart condition, he's been thirsty his whole life because his body's working hard even when sitting still. Being in ICU was no different, body working hard and wants fluids. So we discussed this while he was sitting in the chair. I asked him if anything hurt because he was sitting up. He said his chest hurt. I was told those tubes in his chest were very uncomfortable, especially when vertical, so I explained we were just waiting for doctor's approval to get the tubes out and that's why his chest hurt. He said, "No, my chest hurts because sitting here is bending my scar." Plain, and matter-of-fact, no drama. All this kid's been through and he has yet to whine, when most adults would be giving an earful. I'm also really impressed with his honesty, he doesn't want a pity-party or coddling (at one point he told his mommy to "Leave me alone!"... he's never had that attitude, he was drugged up pretty good).
By 8 he was starting to feel some pain (he was off continuous pain meds). We "talked" the nurse into an early shot of morphine. She asked the doctors if they could quickly do the tube extraction since she'd just given him morphine. Still no answer. I was concerned the morphine would mostly wear off, then they'd want to pull the tubes and wouldn't be able to give him any more morphine. But they're great about pain-managment around here. Sometimes, there's no point in feeling the pain. By 9 we were approved and ready for the tubes to come out, but they happily gave him another shot of morphine.
Tube removal: this is a real treat. During the open heart surgery, 1/4" tubes are routed from the chest cavity to the outside of the body through the belly. There's three, and they come out equally spaced across his belly. The middle one had been removed with the atrial line, which Cannon had been heavily sedated for. We weren't sedated now, just a heavy dose of pain meds. And this time, Daddy got to stay and hold his hand (but I was made to sit down so they wouldn't end up with an unplanned patient in the ICU). In addition to the tubes, wires are left poked into the heart muscle (not THROUGH) so if needed they can shock the heart into good rhythm (this they call "pacing"). These wires proved to be a life saver when Cannon's heart went into junctional rhythm previously. His atria quit beating while his ventricles continued. Consider the nerve that goes into the heart as a highway. It splits off into two directions, north and south (atria and ventricle). The signal was going south to the ventricles but not north to the atria. They had to hook the pacemaker up to get the atria going again. It was these wires that we pulled out first. First wire, no problem at all. Second & third wires proved to be quite painful, even doped up. After the wires we had to get the tubes out. When they were installed, the surgeons put stitches around the tube to hold it in place, and these same stitches are used to close the hole after the tubes are removed. They freed up the tubes, counted to three, and pulled the first tube. OUCH. Cannon cut off circulation to my finger and let out quite a yelp. Then we did the last tube. Wow, what a hoot. I think Cannon and I counted from start to finish there was 13 things we had to take out of Cannon's body after surgery, and all we lacked now was an arterial line in the neck and an IV in the hand.
Once the tubes and wires were out, we got an X-ray to make sure their removal didn't cause any problems. We also had to sit around for an hour to make sure Cannon was stable. Once the X-rays were cleared and he was proved stable, we got moved OUT OF THE ICU!! Down to 15th floor we go.
Me and Tori took some time to get the new room settled in then went up to 17th floor waiting room to get the family and bring them to the new room. We met all the staff, and got the oxygen and basic heartrate machine in place and functional. Got a round of meds. Visitors started coming and we were getting busy! PT came and got Cannon to stand up, and per docs orders took his first steps! That is 150' of steps. Four days ago he had open-heart surgery, today he walks. That's a miracle to me. Considering not many years ago open-heart surgery had a high failure rate and today it's one of the most common surgeries.
At this point, Cannon's diet was limited to 1L of clear fluids and soft foods. Having the tube removed and not able to take many fluids was tough on him, he was still thirsty and they have to limit fluid intake. A liter is nothing for him to put away, and we went over a bit on the first night. I think it'll be OK, he's still alive.
Other than walking down the hall, Cannon spent most of the day in bed. We put the DVD player on his bedside table, he enjoyed that for a while. We spent most of our time talking to visitors (staff, family, and friends). When we got Cannon on some Tylenol-Codeine, life was good! Time is flying now, the day is a blur of medicating and tending to every need he has. He can't use his arms/hands for anything heavy, so he has to be lifted to each new position. Me and my back are real proud he's a beanpole! I'm constantly scooting him back up in his bed and lifting him out of the bed. The only trick here is doing all this without lifting by his torso, including his armpits. Mostly just grab his hips and put 'em where you need 'em.
We got to sleep about midnight and had the usual struggles in a hospital with constant visits and no sleep. We did have some good luck with having the nurse come visit Cannon just as he was about to fall asleep to administer final meds and take vitals. That bought us 4 straight hours uninterrupted... the most I've ever had in a hospital!
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