Day Two Post Op

Well, I am all caught up on this blog now. I explained his story a bit. (I'm sure I forgot a few details, but bear with me.) I explained Day One of Post Op in Charlie's Story. Here I am at 7:30am. I've been awake since 4am. I am a bit scared since the nurse told me they seemed to have a bit of a problem with Charlie's drips this morning, and his blood pressure went wild for a little. During that time, he broke through the paralytic and started breathing on his own again, but once the drips were set, she gave him some more of the paralytic to stop him from taking over his breathing. I am currently waiting for the attending doctors and nurses come around for rounds. (Yes, I sit right there with them and listen in and ask questions. This is my kid we're talking about here. I think I should be aware of what's going on and our game plan.) As far as I know, he is going for a chest x-ray, and they are going to put in a feeding tube through his nose. It's possible they'll be removing the line suctioning his stomach. He was also supposed to be removed from the paralytic again, but because of the problem with his drips this morning, I'm not sure they will be waking him. I believe they may be removing the other chest tube today as well. We shall see! I am getting restless. I just want to be able to hold him and kiss him and see his eyes and smile. I cannot wait until this is over. I don't care how much hell this boy raises. I will be grateful that he is alive. I am probably going to speak with the nurse to see if she knows what's going on, wait for rounds, then wake Tim and get breakfast in the cafeteria. It will be nice not to eat alone. Addison will be coming up today so I can see her. :) I am excited about that. I will update in a little.

Well, I just spoke to the fellow. She said they had a problem with the IV that is in his jugular. Apparently, it had a kink in it so his drip wasn't effectively getting to him so his blood pressure was going up and down. He started coming off the paralytic (not waking up or moving or anything but beginning to come off it) and began breathing on his own. She sorted it out as best she could and paralyzed him again. They are thinking about moving the medicines into the line that is in his chest this way when they lift the paralytic, he can't mess with the IV. They are also going to send him for an echocardiogram and see how and if his heart has improved yet. Then they may lift the paralytic today. He has a feeding tube now. :) I'm going to get some breakfast.


Well, the baby has a fever. Yay. -__- His WBC count is elevated, and they are getting some nasty yellow crap out of his breathing tube so it's possible he has an infection. He is very warm to the touch. His heart rate is pretty high too. It's in the 180s. I have a knot in my stomach. I didn't even think about him getting an infection because they said the chance of one is VERY low - yeah, apparently not that low. My poor baby. Well, until rounds.


I'm attempting to get some pictures of Charlie up here. They're doing his echocardiogram right now.

Well, they're not lifting his paralytic today. His heart function isn't greatly approved which is typical of recovering ALCAPA kids. They will be upping his medication to help his heart contract more. They ar also going to start him on a variety of antibiotics. No feeding tube today, just IV nutrition, but his feeding tube will stay in his nose. I knew they wouldn't be waking him today because of his fever and the erratic blood pressure this morning. It sucks, but this is the best thing for him right now. There won't be more to update today I'd imagine. I will probably write some random postings later about thoughts and feelings and trying to make sense of everything, but until then, I'm going to try to get some pictures on here for everyone.

Well, I got the pictures obviously. I just want to say it is a little difficult for me to share this with everyone because I feel a little uncomfortable sharing these pictures with people, but I feel it is a good part of coping with this all.

My little boy <3

Charlie's meds were moved from the IV in his jugular to the line in his chest this way when they lift the paralytic, he doesn't screw with the line and mess with his meds. They are hoping to lift the paralytic tomorrow, but it will all depend on his heart function. I assumed we caught the defect before he went into complete heart failure, but apparently he was a lot worse than what I assumed. His liver hadn't started to fail, but his heart was pretty sick. (Most kids are already in complete heart failure or CHF and have some liver failure by the time they are diagnosed with ALCAPA.) Charlie's older sister, Addison came to visit him today. She was very excited to see Mommy and Daddy and Charlie. She even kept her mask on like a big girl so she didn't spread any germs to him.

"I want to talk to him for a minute." She kept saying. lol :) 

She went home with Daddy. She really needs the stability of at least having one parent with her. This is a crazy time for our whole family, and I don't want her world to be turned completely upside down. Charlie's great-grandfather, (the one he is named after) came to visit for the first time today. It was very hard for him to see Charlie like that, but I was very thankful he came up. He is like a grandfather to me so I must admit, I was a little upset when he didn't come up initially, but I completely understand his reasons. Charlie's grandmother's girlfriend also came to visit. She has been very supportive and proactive about his affliction. It's nice to have so much support in a time like this. It is still really difficult to fully cope and know how to deal with everything. It's really overwhelming. You know, writing this blog is more for Charles and I than anyone else. (No offense.) It's to share his story, his strength, and his will to live with everyone, and it's a way for me to attempt to deal with this. I was pretty saddened that I missed the support group today for parents of children with heart problems, but I was spending time with Addison. I feel I don't really have the time to talk to anyone about how I am feeling. Everyone keeps talking about how strong I am being, but truth is,  I haven't found the right person or place or time to breakdown yet. Just today, Grampa, Trace, and I were talking and drinking our coffees, and out of left field, I found myself fighting not to cry. Nothing was said or done to trigger it, but I was just close to crying. I can't explain it. Maybe I just need to talk to someone who knows what it's like to be in my shoes - almost lose a child, see your infant go through heart failure, open heart surgery, be paralyzed, and to know there is nothing you can do to make them better. I understand everyone is available for me to talk to, and they would like to help, but it's just very hard to describe what I am going through unless you have been there yourself. I really wish that Timithy would discuss how he feels with me. (He has always been sort of emotionally disconnected though.) It would help to feel like he is hurting just as badly as I am. It's amazing how alone you can feel even when there are so many people helping. For whatever reason, I can recall talking to my physician and being asked, "Has anything life-changing happened to you in the past so-and-so months?" At the time, the question made me laugh. It's like, why would they ask that? I know now that it's because when you are hit with something drastically life-altering, you are just in complete shock. It STILL amazes me that it's only been four days since he's been diagnosed, and in that time, he has gone through major heart surgery. (I know I am jumping from topic to topic, but I am just trying to get my thoughts out here, and they're pretty scattered. I've been up for about 15 hours right now. Bear with me.) I have been really on edge lately, with good reason given the stress I've been under, but I mean, I see these girls on Facebook who are complaining about stupid shit; I see these moms who don't deserve their child(ren) in the least, and I just want to smack them. You have no idea what pain is, what sadness is, and how lucky you are until your child is almost taken away from you, and you know what? I have no idea how much pain and sorrow comes along with losing a child so I am grateful for what I have. I have a new outlook on things.  I'm sure I sound a bit silly and am not making tons of sense so I am going to give my brain a rest for now. I may write more later on tonight. Let's see how the night goes. Moment by moment, these days.