Day Three Post Op

Well, I was surprised at how much I actually slept! I went to bed at about 10pm and woke up at 6:30am. I haven't slept that long in forever. It was just such a quiet night, my body thought it'd catch up on all the sleep its missed. Charlie's blood pressure and temperature have been very stable all night. His heart rate is a little high (170s - 180s) but it's mainly due to the fact that they're weaning him off of the dopamine and increasing his epinephrine. (The dopamine maintains blood pressure while the epi helps his heart contract, and at this point that is exactly what he needs because that is what is going to help his heart function improve.) They are pretty certain he will be getting his chest tube removed today as well as the I.J IV (intrajugular IV) so he will probably be coming off the heparin too. (Heparin is the blood thinner he is on.) He really seems to be doing well today. I am hoping his heart can handle coming off the paralytic today. I will try to keep you all updated as I get more information. Dr. Baird, the surgeon who performed Charles's open heart surgery and valve repair came by to see him today. He's actually been coming by about twice a day. It's really nice that the doctors and nurses here care enough to follow up as much as they do. :)
I talked to Tim this morning, and he got more information about getting a referral so we can keep Addison's daycare. He is going with his grandmother this afternoon to set up a donation account for Charlie. I feel as if we don't need it because we aren't paying for his care out of pocket. (Thank you so much, Masshealth!) and I've been doing okay as far as buying food and whatnot. I feel guilty asking for donations because I don't feel we need them. Tim goes back to work Monday so we are missing out on one paycheck. We still have our cash benefits and food stamps to pay bills and buy food. It's really as if everything was normal. I would really just like to get support from everyone and raise awareness because it's such a rare defect, and it almost took my little boy. No one, including myself, had ever heard of ALCAPA before this.
I talked to my dad because I emailed him last night and asked if he could throw in a few dollars to help me buy this stuffy for Charlie. http://www.amazon.com/Mary-Meyer-Christening-Blanket-Lamb/dp/B000WIV45U/ref=sr_1_3?ie=UTF8&qid=1332423840&sr=8-3 I had a $10 Amazon gift card, but the thing was $12. lol I know it's all religious, but I could care less. I just wanted him to have something to cuddle with when he gets up. It should be here by the time he is awake and alert. :) Well, I will write back after I get some updates as I said before. Rounds should be soon so we will see what the game plan is.

They will be removing some of this stuff today hopefully!

Still has his chunky cheeks. Can't wait to see those eyes open! Maybe today!!!

Great news! I sat in on rounds about a half hour ago, and here is the game plan for today. They are going to stop the heparin and dopamine. (The dopamine is making him a bit tachycardiac, and they are removing his RA [right atrium] line today as well as the chest tube so they are stopping the heparin.) In about an hour and a half, two hours, they will be lifting the paralytic to wake him up! :D Hopefully, his heart can handle it. I believe if he starts to get too rambunctious, and his body doesn't handle it well, they will increase his morphine, ativan, and methadone as opposed to placing him under the paralytic again. (Methadone helps sedate him and deal with pain while keeping his heart rate down. I heard methadone and was like, "Huh???" lol) If he handles it well, they will probably start feeding him through the feeding tube tomorrow. I hope he does well because I really want to see him with his eyes open! I want to see him move around. Next big feat will be getting him off of the breathing machine so I can hold him! lol That won't be for a while though. It's okay. Baby steps. I am just so excited about them lifting the paralytic today!!! Updates later obviously!!!

No news yet, but I was thinking, they have ribbons for so many different things, but they don't have one for ALCAPA. They seriously have a ribbon for HEADACHES. Wtf.? I am declaring red ribbons for ALCAPA. lol What better color for a heart defect? :) Lifting the paralytic in an hour, removing the tubes within the hour.

Well, I am back from lunch with Tim's dad. They were giving him some fluids before I left to see if his heart rate would drop a little. (It's in the 180s.) It hasn't so they are going to be lifting the paralytic shortly. I was speaking to Tim's mother's girlfriend about the medication Charlie is on, and I was wrong. He is on ativan, methadone, and morphine right now. The plan in case his body doesn't respond well to lifting the paralytic is to up all of those meds. I didn't realize he was currently on the ativan and methadone.
To further discuss the ribbon idea, I know that red ribbons are for AIDS, but they are also for quite a few other things. My mother and I were discussing possibly shaping them into hearts or gluing little hearts on them. Again, while I was speaking to Tim's mother's girlfriend, she informed me the West End Grill of New Bedford has offered their restaurant space for a benefit to raise awareness and money for Charlie. Perhaps we could give out the ribbons at the benefit. I will definitely figure something out. I am debating on whether I want to have the benefit before Charlie gets out of the hospital because afterwards, he will be recovering still, and I don't want to add stress on his little heart even after he is discharged from the hospital. (His heart won't be functioning 100% for quite some time.) I will let you all know when I know.
They lifted his paralytic. Now it is a waiting game!
Charles has received his first donation from Pepere and Gramma Lou. <3 Thank you guys so much!
Well, it's been a little, and he still isn't up, but I just went and donated blood. While Charlie was in surgery he needed a blood transfusion so I thought it was only right I go an donate blood on his behalf. I absolutely hate needles, but I sucked it up and did it. I mean, there is really no reason I shouldn't have. I'm in a friggin' hospital 24/7. It's right downstairs. Why not? Anyone who comes and visits Charles should donate, if not because it helps four children, and there is a shortage, then because you get free parking. Just saying.
Well, Charlie is initiating breaths, responding to touch (although he is still not opening his eyes), but his heart rate is around 190. I tickled his foot, and he pulled it back. Let's see!!! :D :D :D :D
Okay. I saw him move. :D :D :D :D I am really trying my hardest not to bother him because his heart rate is high. He is initiating some breaths. They upped his dopamine (although they were supposed to wean him off of it) but they are planning on lowering the dopamine and milrinone to lower his heart rate but to keep his blood pressure at a normal rate. As long as his O2 levels are okay, I believe they plan on keeping him off of the paralytic. I honestly feel they will put him back on the paralytic by morning time. It seems he is having a little trouble being off of it. We shall see.
They gave him a dose of the paralytic (but didn't put him back of the paralytic drip). They are hoping that by the time the paralytic wears off, his sedation will be enough to keep his heart rate at a good place as well as his blood pressure. He is getting methadone and ativan every two hours and is on a morphine drip so let's pray he doesn't need to go back on the paralytic drip. I am going to head down to my sleep space and shower and chill out for the night. As guilty as I feel, I need to get out of this room. I haven't even been outside today. (Please don't lecture me about how I need to get out and whatnot. It honestly goes in one ear and right out the other.) I need to go down to my sleep space and play some music and just chill out for a little. My past week has been living in an ICU room. I need to change my scenery for a few hours. I'll update afterwards.