Day Four Post Op

I should really learn to have more faith. Though the night, Charlie improved dramatically. His heart rate dropped FIFTY POINTS! His current heart rate is 144. His blood pressure is great. He is still receiving the methadone and ativan every two hours and the morphine drip, but the reason for his high heart rate last night was apparently the ventilator. Charles is fighting so hard - he is fighting his ventilator. They changed the mode of it so that when he initiates a breath, the ventilator realizes it, and it allows him to breath. The only time the ventilator breathes for him is if he goes a certain amount of time without a breath initiated by him. They lowered a few of his medications. The game plan today is to take him off of the dopamine completely and to hopefully start feeding him through the feeding tube. If Dr. Baird has time, they will probably remove the chest tube as well. God, I am so friggin' ecstatic this morning.
I want to let the iheartcharlie followers know that Charles's grandmother has set up a spaghetti supper benefit for him. It will be on April 14th from 3pm - 4:30pm at the West End Grill in New Bedford, MA. (The information is on my Facebook if you are my FB friend.) I want to say thank you to Danny and Maria Tremblay and their daughters, Monia and Michelle, for donating the West End Grill for Charlie's benefit. Also, I want to thank Joe for donating the food that will be served that day. (I'm sorry I didn't list last names!) Feel free to comment though, guys!! :D
Also,. Tim's grandmother set up a donation account for Charles. I am amazed at how much is already raised for him! More thanks are in order to Tim's grandmother and her co-workers, Linda and Auntie Ann and Uncle Tommy. Thank you all so much. It really means a lot. To donate to the Charlie Gonneville Medical Fund, you can send it to:
Sovereign Bank  440 Mount Pleasant Street  New Bedford, MA   02746
Please make checks payable to Charlie Gonneville Medical Fund. This will all help with gas for his dad to get back and forth to Boston, for me to eat while living in the ICU unit, (No, they don't feed you here.) and for anything else that may come up, possibly paying for Addison's daycare while Charlie is recovering since her daycare voucher is being terminated, for any bills we need to pay while Timithy is out of work, etc. At first, I felt a little cheap asking for donations, but I took a second to realize how much money Tim and I have spent in gas in food in the past week, and I am shocked. I had so much on my mind, money was the last thing I even cared about. (Again, the information is on my Facebook.)
I will update later today. :)

Well, I have been trying to help with the spaghetti supper for Charlie as much as I can. It really makes me happy to know that there are SO many people willing to help and who care as much as they do. I am in talks with my mother about making pins, either heart shaped or regular red awareness ribbons since red ribbons are also for coronary heart disease or half blue and half red ribbons for congenital heart defects. Speaking of CHD, I found this necklace online that I very badly want for my birthday. http://www.craftsnscraps.com/awareness/heartribbons.html I am most definitely getting a heart-related tattoo for Charlie. (Don't even think about copying my idea! I will kill you! lol) I am in a much better mood than last night. The weight of it all was starting to creep up on me especially talking to Addison on the phone. She kept asking when Charlie and I were coming home. I hate being away from her so much, but I need to be here for Charlie. It would help if Tim would be there for her as much as he could. I mean, he is trying to help but not as much as he should be, in my opinion. I am just at the point right now where I have ZERO patience and tolerance for people who are trying to complicate my life so if I snap at you or freak out on you, know that it is obviously something you are doing. I have been trying to keep myself as clear-headed as possible, but the longer I am here, the more everything is toppling over on me by the end of the day. I need people who are going to help me be progressive and strong just as I am trying to do for my son. For the most part, people have been extremely supportive, and I am incredibly grateful for that, but there have been a few hiccups, and they just add more to an already filled plate that I have right now. Perhaps I am being a bit harsh on Tim, but I expect him of all people to be trying just as hard as I am since this is his child fighting to get better. I slept quite a bit last night, and I was pretty upset. I just needed time out of the hospital room, and things were making me pretty crazy yesterday. Today, Tim, Chelsea, Addison, Tim's father and grandfather and aunt are coming to visit today. Tim's mother and his mother's girlfriend are also coming up tonight. Tomorrow, my father, his fiancee, and my cousin are coming up. I believe that's all we will have for visitors tomorrow surprisingly. Sunday, my mother and her husband will be up as well. Not sure if my father plans on returning Sunday as well. We'll see. Off to breakfast! Can't wait to see my princess!!

So I sat in on rounds, and here is the plan for Charlie  - They are hoping to stop the dopamine completely while going up on the amount of methadone and decreasing morphine drip. They are planning on getting him off of the morphine to wake him up a little more. Hopefully by Monday or Tuesday next week, he will be off the ventilator. They removed his catheter so he is now peeing in a diaper. :D I never thought I'd be happy to change his diaper again. lol Things really seem to be moving forward for him. They are going to decrease the pressure from the ventilator to see if they can stimulate some random breaths from him. *sigh* My peanut. I am looking at more CHD (congenital heart disease) stuff and Team Charlie things that I'd love for my birthday.
I know that it's a bib for Charlie, but it's funny! http://www.cafepress.com/+breath_of_hopes_nicu_children_bib,362412952
This sweater is $40, but I would wear it every day, summer or not.
http://www.cafepress.com/+son_chd_survivor_womens_zip_hoodie,566875519
This shirt is adorable! http://www.cafepress.com/+infant_bodysuit,594460731
This website has a lot of cool things for CHD. Check them out!!
Well, I'm off to get some breakfast before everyone heads up here. I'll update if any new news.

Apparently, they are lowering his epinephrine as well. He is completely off the dopamine. Also wanted to say I contacted SouthcoastToday about possibly doing a story on Charlie and to help raise awareness for congenital heart defects in general. I am also going to talk to Fun 107 about it as well. Maybe they will want to help out. Hey. You can only hope! Here are some pics of Charlie today. They are from earlier, but right now, he is all snuggled up. They swaddled him.

The brace is so he doesn't pull his tubes out.

I wanted to take a video to show you how he responds to me tickling his feet but it was being silly.

The breaths per minute on the ventilator went from 18 to 16. They increased his feeds. Good stuff. I got to see Tim and Addison today. I was really nice to spend some time with them. There were quite a bit of visitors today, and I was really proud of them for donating blood. (and attempting to, but they were closing up when Tim and his sister went to go.) I spoke to Tim's mom today, and she asked if I was going to keep the blog strictly about Charlie and his progress, and I'm not going to. I will talk about how I feel and what I am going through because people need to know how it affects EVERYONE, not just Charles. A situation like this turns people's lives upside down, and I am hoping that this could help others. It helps me to vent and get things off my chest so this situation is easier to deal with. Just wanted to share that. It seems to me that tonight is going to be a quiet night. Tim is coming to stay with me tomorrow while Addison sleeps at Tim's father's house. My father and his fiancee are coming to visit as well as Tim's mother and her girlfriend. I'm not sure who else is going to come see him. Busy, busy, busy.

I wanted to quickly mention that I put the wrong zip code for Charlie's medical fund. It is 02746 not 02745. Also, I have been emailing Michael Rock from Fun 107, and they are going to promote Charlie's dinner and medical fund! How cool!!

Tonight is truly a great night. Guess who decided to wake up a little??? :D :D :D :D

I have been waiting a lifetime to see those beautiful, blue eyes again. <3