JB and the nurse just took Jace down for his EEG this morning and I hope they see more improvement on it! We may not get a report on the EEG until WAY later this afternoon or tomorrow morning. While they are down there I am cleaning up the room some then showering but first I wanted to update while I had the chance to.
Jace did a little better with his episodes. He had 8 total yesterday and the last one last night was at 5:30pm. He didn't have another cluster until 6 am this morning (that we could see). However, he also slept much better once getting the Tylenol. With him waking up and falling back to sleep less often at night helps since transition in and out of sleep can cause seizures to fire up. We thought they were lessening but Jace started with another episode at breakfast time, which was only a little over an hour and a half since the last episode. This time between his head drops he was shaky. This certainly new so we are going to keep an eye on that. What breaks my heart the most is when these episodes make his eye tear up.....this morning he had actual tears rolling down his cheeks. :(
We will get this all figured out. I have faith that we will!
We can use all the prayers possible! Share the story with your prayer circles please!
"Pray for one another so that you may be healed, the effectual fervent prayer of a righteous man availeth much." - James 5:16
I need to at least vent about this....as I am sitting here posting this I over hear the primary care team discussing Jace. Now these are the people that think Jace needs to go home but have to deal with neuro going over their head to keep him.
I notified the nurse last night that Jace was still having goopy eyes (this night nurse has been our night nurse since being here) and has seen the goop. She then notified the night doctor who came in and checked his eyes. His eyes were not nearly as bad as they are in the morning since we have recently cleaned them up and he had a shower. Anyway the nurse called the night doctor again about Jace's cough that was waking him up.
Anyhow - the primary care team was about to make their rounds to Jace when they realized that Jace was gone for his EEG. I over hear them discussing him and the night doctor said something about me being "something" (didn't catch what she said) then she said she was even called in twice - once for eye boogers and another time for cough. Grrr......I didn't ask for you to come I just wanted the nurse to note that we were dealing with this stuff and we needed to keep an eye on it. If his eye progress to the extent they did last hospital visit I will be tempted to say something. And Jace does have a cough which seems to really bother his throat. Just because he was not coughing and whining about it when you came in doesn't mean that it's "nothing". The poor baby is miserable at night.
I hate hearing how they talk about the patients and the parents. We know our children and your doctor degree couples with the 3 minute visit to the room doesn't make you know whats going on more than us parents.
Vent over....I am going to shower!
I need to at least vent about this....as I am sitting here posting this I over hear the primary care team discussing Jace. Now these are the people that think Jace needs to go home but have to deal with neuro going over their head to keep him.
I notified the nurse last night that Jace was still having goopy eyes (this night nurse has been our night nurse since being here) and has seen the goop. She then notified the night doctor who came in and checked his eyes. His eyes were not nearly as bad as they are in the morning since we have recently cleaned them up and he had a shower. Anyway the nurse called the night doctor again about Jace's cough that was waking him up.
Anyhow - the primary care team was about to make their rounds to Jace when they realized that Jace was gone for his EEG. I over hear them discussing him and the night doctor said something about me being "something" (didn't catch what she said) then she said she was even called in twice - once for eye boogers and another time for cough. Grrr......I didn't ask for you to come I just wanted the nurse to note that we were dealing with this stuff and we needed to keep an eye on it. If his eye progress to the extent they did last hospital visit I will be tempted to say something. And Jace does have a cough which seems to really bother his throat. Just because he was not coughing and whining about it when you came in doesn't mean that it's "nothing". The poor baby is miserable at night.
I hate hearing how they talk about the patients and the parents. We know our children and your doctor degree couples with the 3 minute visit to the room doesn't make you know whats going on more than us parents.
Vent over....I am going to shower!
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