Another day, another hospital stay. I did get to go home last night and sleep in my bed, which was heavenly. My head hit the pillow and then I didn’t wake up once until my alarm went off seven hours later to get up for a run. I hurried up to the hospital after so that Shane could leave in time for a meeting he had at work. It felt good to get a night’s sleep without any interruptions. I’m sure Asher wishes he could have one of those too!
Right before I got here, Asher had thrown up part of his breakfast. One of the side effects of his lasix and of his spirolactone is nausea, so I think those combined with the surgery recovery just make his stomach a bit off. Maybe because of that, or maybe because he is getting tired of the three menu options that fit within his lowfat paramaters, he didn’t eat too much today. I did have some watermelon from a meal someone had brought over, and some rice chex in the cupboard that I have for breakfast, and he ate both of those right up for lunch, not touching anything on his lunch tray. He does like the chicken strips, so he ate some of that with his dinner.
Asher had to have his dressings changed on his pleural caths, which he hates, so the child life specialist came in again to help him through that. They have to remove the old tape, clean it with alcohol (it stings), and then re-apply the tape. He had Meme back as his nurse, which he was excited about, and she tried to be as gentle as possible. He cried and screamed out a few times through it, but he did his best to stay distracted by the game the child life specialist was playing with him. He also had to have an echo today, which he was super nervous for because he doesn’t like anyone or anything touching his chest, especially near his incision. He made it through though with only a few tears.
Getting his pleural caths drained while playing wii. He has to sit up, then lie on one side, then the other, then his back.
The afternoon was filled with a nap, bingo, a short trip to the garden, and some wii. His right pleural cath is still putting out a lot of fluid (50+ ml every six hours), so we are praying that can dry up or at least slow down enough that we can go home soon with it. It looks like he will be able to get out his other JP drain and his left pleural cath tomorrow, since those have been mostly dry for a day or two now.
I talked to the nurse tonight, and she did his 10 p.m. vitals and meds at 9 p.m. instead so that Asher could just go to bed right after and not have to wake up until they came in at midnight to drain his pleural caths again. I am grateful for so much with how Asher is doing. While I wish we could be home and it is frustrating that his right pleural cath is the only reason we are still here, I am so grateful that we are not still here for other more serious reasons. I am grateful that he has courageously handled everything that he has needed to, even when he is scared or doesn’t want to. I also think all of this is so much easier with a four-year-old instead of with a baby. All of this was so much more draining and so much more work when he was only a few days old and only a few months old!
Asher only days old and at one week old after his Norwood surgery (above), and at three months old after his Glenn surgery (below). We were in the hospital two weeks after his Norwood (record short time for the Norwood), and only one week after his Glenn.
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