Update (Long)

It has been two days now and soo much has happened. I haven't been able to update as much as I would have liked to but you know how it goes.

So Day 1 was an up and down day...
I updated about the chest tube and all that. Toward the end of the day he looked much better and I was able to go back to the hotel and get a much needed nights sleep. This morning we came in and he had a little bit of his sense of humor. He poked Travis on the nose and tried to bite his finger so he had a little bit of a sense of humor. That went away pretty fast. He has just had a rough day. The nurses have been telling me that day 2 is the worst so I keep trying to remember that. He still has the two chest tubes and only one is draining fluid so that is good. His chest x-ray this morning showed some improvement in the top of his lungs but the bottom still has quite a bit of fluid. He has a congested cough and of course is hurts to cough so we have to encourage him and make him hug the pillow. He is currently on two different pain medications, one scheduled and one when he needs it. The one that is when he needs it he doesn't like the way it makes him feel so he didn't want to take it. He went all day without taking it so this evening got pretty bad. He was grimacing alot without even moving so I finally talked him into taking it. He is sleeping finally so now I get a chance to update.

His oxygen is still up and down. Sometimes he will be low and then other times he doesn't even need the extra oxygen. We have been trying to roll him side to side to clear up his lungs and get him out of bed but today wasn't very productive in that area because he just felt plain blah. One goal for today was to get up and walk in the hall even if it was a few steps. We didn't quite get there. Maybe tomorrow will be a better day.

Another issue today was his blood pressure. One of the goals for today were to take out the arterial line in his wrist that was monitoring his blood pressure. Throughout the day his blood pressure has continued to go up and the doctors do not want it up because it will put added pressure to the newly sewn valves in his heart. They had to go up on the medication that keeps it down and start another one by mouth. So the arterial line is still in so they can monitor that closer. One of the side effects of that is flushing and headaches, well he has them both. They also changed to lasix that he was getting to another diuretic in hopes of getting more fluid off of his lungs.

He was supposed to try to get to solid foods today but he only got to some Gatorade today, which is ok but again not one of the goals that was set for today. I know that he isn't going to meet the goals for everyday but today was just a rough one. I can't take the pain away and that is hard. Another things that is getting to me is that he is the kid that stubs his toe or cuts his foot and keeps running. He can't do that so it seemed like he was just a little sad today.

I think I have covered just about everything and if it seems choppy I apologize because that is how my brain is feeling right now, choppy.

I have absolutely no complaints with the care he has gotten so far. They haven't made me feel like I was too much or like they didn't care. Most of the time they have been concerned with something that I didn't even notice or think to notice. I am DEFINITELY NOT a peds person. They like the fact that I try and help and that I want to be involved. So as far as his care goes I wish I could buy them all cookies and cupcakes.

On a couple of side notes...I am doing pretty good. Only a little bit of discomfort in my belly but nothing that is too much. I am supposed to go to the dr to get cleared to do more stuff like drive but don't think I will be able to make it because my appt is on Tuesday and according to the doctors we probably won't be home until the middle to the end of next week. We appreciate all the love and support that has been shown so far and we ask for your continued prayers.

{UPDATE}...around 8 o'clock tonight Cyrus woke up from his nap and was bright eyed and was his old cute self..a little meek but he was joking and playing with Travis. Sometimes I think he likes him better. LOL. He was up for about 2 hours he ate a couple spoonfuls of chicken noodle soup and got in the chair. He did some deep breathing and coughing and then we put him back to bed. I'm writing this now at 10:30. The nurse just drew another blood gas and he has to have potassium replaced and his oxygen is still a little low but within the parameters that the doctors want. I'm still debating about staying here tonight or going back to the hotel.