Ethan's day yesterday went okay. We were in PICU and everything was uneventful throughout the day. He is extraordinarily clingy to me, depressed, and acting like a baby. This started up the minute we were readmitted. :( He refused to get out of bed or even sit up in bed all day long. John finally arrived around 8:30 last night so I snuck out of the room to shower. While I was down there Ethan completely flipped out. He threw a massive fit and got so worked up that he became tachycardic again and went back into A-Fib. I couldn't believe it. All we had to do was have a perfect day/night and we would have been able to go home today. Nope. Ethan had different plans. His heart rate was up and down all night long and he had arrhythmias throughout.
This morning during rounds the docs decided to increase his Nadolol dose. He also was given Digoxin again since his last night's dose was held after finding out his levels were too high from the morning blood draw. After those meds were administered his heart rate was perfect and we were moved to step down. We were able to take multiple rides in the wheelchair today to roam the hospital and go to the playroom. He didn't feel like playing with anything, but this evening he did attempt to play the iPad. He even sat up straight for about two minutes before giving up - that is a big record for him!
Ethan did throw up around lunch time. Once again he threw up an entire pill - one that he had taken hours before and should not have been intact and in his stomach still. I don't know if it is getting stuck in his throat on those "ridge" things we saw in the swallow study, or if there is an issue with his stomach. We are going to have to do a stomach emptying study on him. That might be a big part of why Ethan is never hungry and always feeling sick now.
Occupational therapy came and saw us this afternoon. She made Ethan get up and take a short walk to the phone in the hallway. He argued and moaned the entire time, but at least he did it. He has not been friendly to anybody today. He is arguing, yelling, and refusing to talk to doctors/nurses/therapists. It has gotten a touch better as the evening has gone on, but this afternoon was horrible! I hope he will be more cooperative and nice tomorrow!
We still don't know the true reason that Ethan's heart is arrhythmic. We were unable to do his breathing treatments because they are afraid the shaking of the vest will cause rhythm issues. Also after his Xopenex treatment today he spiked up and had a bunch of issues, so that is not going to continue for the foreseeable future. We are weaning off his oxygen though! We were able to take it off around lunchtime and only had to put it back on for a couple of hours earlier this evening. It is now back off and he has sats in the upper 70s to low 80s. We still definitely expect to see improvement with that as his lungs heal.
Dr. Z stopped by earlier this evening and was a bit disturbed at what he saw. Ethan moaned the entire time. He didn't seem pleased either - Ethan is just acting completely wrong. He is miserable. I think being in the hospital is making it a lot worse on his psyche and I think he really needs to get home to kind of mentally recover from everything. Dr. Z was wondering if he is having some kind of psychosis issue. He could be dealing with some kind of PTSD or issues as a result of medication/sedation. We just don't know yet, but he definitely needs help. :(
I unfortunately missed Callie's school open house this evening which I was really looking forward to. Ethan's is tomorrow night, and I don't see us making that unfortunately. :( Ethan does have a meeting at school tomorrow morning to go over his plans for the year. I spoke with them on the phone today and they said his teacher this year is wonderful, and they are offering home school/tutoring for him! They are so supportive and are working to help make Ethan's time off and transition back as smooth as possible. :)
Please keep us in your prayers - we are so appreciative of them! Please pray that Ethan remains stable and his new med doses are exactly what he needs to keep his heart happy and in sinus rhythm. Please pray that we get a good night sleep and that Ethan and our roommates are quiet and good. Please also pray that Ethan is happier, more cooperative, and nicer tomorrow to everyone. Also we need prayers for his eating. He is absolutely refusing to touch a bite of food during this admission. I don't know if his nausea is that horrible or if it is also emotional. We thank you for your prayers and support, and please keep them coming. I hope and pray that we will get out of here tomorrow!
No comments:
Post a Comment