Today was a big day for James-I expected it to be a lot of rest, but that's not what his medical team expected apparently! This is so different compared to when James was a baby. In order to recover, toddler James needs to be up and moving, whereas baby James just needed to rest and eventually eat. It was exhausting for Jared and I, I can't imagine how James must have felt.
The night went well, and I must have been so tired, I actually fell aspleep for a 4 hour block before being awakened by our new day nurse, Kristi. She informed me they were preparing to take out his breathing tube, so I popped out of bed to help James. Apparently they had weaned him down from full oxygen, to breathing room temp and even going above the machine, hence the decision to remove the tube. They suctioned out his lungs quite a bit beforehand, and then pulled it out-obviously not comfortable, but James seemed so much calmer after. He has several moments during the night when he would just lay there with his mouth open trying to cry, and he would not close it, even when it seemed he had fallen back into sedation. They kept wiping the inside of his mouth down with a wet sponge, and I think that was more soothing than morphine for James. Anyhow, once the tube was out, you literally could see his body relax again to some degree, and he was doing well breathing on his own.
They started James on lasix today to help with swelling in his thoracic region, and that tends to mess up electrolytes, so they also gave him infusions of calcium and potassium. He weaned off of two of his blood pressure meds with goals of moving off of two more through the day. He was started on Torodol for pain management, as he seemed agitated and uncomfortable. He continues to wake every 45 minutes and has tried on several occasions to sit up, roll over, or curl his legs up. His nurse did put restraints on his wrists to make sure he doesn't subconsciously try to pull any of the tubes out. I am doing my best to calm him with each episode; it is a difficult process.
James' nurse doesn't want him resting ton today apparently. I do not particularly care for her, everything seems like a checklist item that he just needs to check off to go home. While I want him to go home, I want him to be pain-free and to feel safe, and I don't feel he has been either one today, especially in certain spurts. As an example, Kristi gave James a good shot of morphine at 1pm and didn't give him another until the shift change at 7:30pm....our night nurse was very surprised. Kristi said to me at one point, James just had heart surgery-he's going to hurt and be uncomfortable here either way, its better to get him home. While I agree with the home part, I am not sure why you compromise pain management to make that plausible. I made it very clear to the night nurse we wanted James pain-free, and that sentiment was then clearly portrayed to the folks on rounds that evening. I liked that night nurse a lot after a bit of a difficult day not truly connecting with our day nurse.
Finishing up the thought process that started the preceding paragraph, James actually got out of bed today and sat in his chair. He tried taking a drink of water but started aspirating it into his lungs a bit, so they restricted him to ice chips, which he loved, loved, loved! He held the cup on his own and kept grabbing handfuls and just shoving them in his mouth. I went home to rest with Jackson during naptime, and while I was gone, Jared helped the nurses and physical therapist get James up and on a walk up and down the hall. Jared says James hated it, saying "no" the entire time, and eventually "want to go home"; however, the simple fact that he was walking well was very good news, and walking is essential to strengthening the lungs post surgery. He fell asleep right after his walk, he was so tired. On a similar note, the fact that James is talking (albeit softer and raspier), it is a huge blessing to hear him talking, as that means his vocal nerves didn't get damaged during surgery. His upper register when he cries is specifically softer, but its nice to know James hasn't lost his ability to speak.
Since James is aspirating liquids, they have a respiratory therapist coming in every 3 hours to do pap treatments, basically pure oxygen being forced into his lungs through a breathing mask. Its painless, but James does not yet like the feeling of having mask over his fact, and really flips out for the first few minutes until he finally calms down. He is allowed to drink liquids, but only if they are thickened with this gel stuff. They also tried some oral meds tonight (the lasix is oral) as that will be necessary before he can have his IVs removed. He drank it down okay, but he threw up about 20 minutes later, which was sad, and you could tell it hurt his chest a bit. We will wait to push oral meds a little more in case he is still nautious from surgery.
Overall, James was quite despondant today. He was moaning a lot and saying no to everything. He would jerk awake from naps within 30-45 minutes, and he started pulling his hair today, which to me says he was feeling pain. I am hopeful that with a more proactive and understanding nurse tonight he will get some rest and pain-free moments. He is such a fighter. I'll be staying the night again so Jared can go home with the kids and get them to school tomorrow morning before heading to the hospital.
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