Day Thirteen Post Op

Sorry I didn't update last night. Unfortunately, I didn't sleep at Tim's father's with Addison because they moved Charlie out of ICU yesterday! I had to be there to learn how to give him his meds, but I did spend some time with her. We had dinner at Tim's dad's house. His father's wife made my favorite food too. :) It was nice to have some time with Addison. I am glad that I will be home soon. The doctor her is telling me that hopefully Thursday, we will be home. He has no more pacing wires, no more "A" line, no more IV's or anything else besides his broviac line and his leeds. The broviac line needs to be taken out under anesthesia. That is why we will have to wait so long to go home because Charlie is doing super with his feeds. He is doing anywhere from 3oz - 6ozs at a time. He is sleeping well also. They did a chest X-ray and said his heart is still enlarged as well as his liver, but his lungs are clear so with some suctioning and chest PT, he should be okay as far as congestion. They lowered his ativan and methadone, took him off of the hydrocortisone, and is doing well with his meds by mouth. No more feeding tube either!
Tim and I spoke again about getting married, and he decided that we should get married sooner with a small wedding. :D He suggested my birthday, but I think that doesn't give enough time to set up some wedding stuff. (A dress, a tux, rings, and a reception at Pub99, I hope! lol)
I will DEFINITELY try to add more pics of my little man without his tubes and whatnot after, but Tim and Addison and our other visitors need some attention!

I've been waking Charlie up to feed him because he is just so sleepy. He is being weaned off his ativan first, (He can go home on the methadone but not the ativan.) I'm not sure if he is having withdrawals or what, but he was a mess tonight when he was due for his methadone. He was so fussy and seemed like he wanted to eat but wouldn't. He had two ozs. I wasn't sure if it was because of gas, because we woke him up to feed him, or whatever other reason. He was so mad, and normally, he isn't like that. He was like that the day before he was diagnosed. That was why I brought him into the hospital on St. Patrick's Day - not eating and being super fussy. I rocked him for a while until he calmed down and laid him in his bed. I figure since it's just him and I in the room tonight, maybe we'll sleep well. (Last night, there was a dad and his daughter on the other side of the room. It was just odd to share a room.) The doctor mentioned today that Charles's liver is a bit enlarged because of some backed up blood from his heart failure. Given this new information and his behavior tonight, it is a bit frightening although they told me not to worry. They said it is normal for an ALCAPA baby. The doctor also said that in her twenty years here at Children's Hospital, she has seen maybe four cases of ALCAPA. 

I am so exhausted from getting awful sleep the past few days that I feel like I am just functioning somehow without even thinking about it. I need a nice shower at home and a good sleep in my own bed with my husband-to-be. Just knowing I am with my family will make my anxiety and stress go down some. I will have to find someone in New Bedford to see as far as counseling. The medication Brigham and Women's started me on has not helped at all. It has made me toss and turn all night and feel sick to my stomach. Maybe that's just the anxiety though.

It really made me happy today to see Timithy take interest in his son. He was happy to see him, wanted to hold him, and was also curious about his meds and asked a lot of questions. He even gave the baby some of his meds. :) He was very affectionate towards me today. It felt really nice. We have been talking about the wedding again and really getting things started towards it. He kept saying "Brooke Gonneville" today, and it just sounds funny. To think that in about four weeks, that will be my name. For the past 21 years, I have been "Brooke Amarantes" and now I will share my children's and my partner of the past seven years' last name. 

We should be heading home soon. Tomorrow, they will schedule his echo and broviac removal. Then after that is performed, we can go home within the next 24 hours, BUT it may take a few days to get the echo and broviac removal scheduled. :(  I just want us to go home already. Tomorrow makes two weeks since his surgery. It STILL seems so surreal, and I am honestly STILL in shock. I understand that this is the best place for him, and he needs to go home when he is ready and safe and on the right track, but it's been a hard couple of weeks, and I am so ready for the future. It looks hopeful and promising. A new last name, a second chance, a changed outlook on life. I will never take my family for granted again. I will never underestimate my strength and that of my children and husband. Everything has a new value to it, and I realize I can only take it one step at a time, and this, too, shall pass. Good night, everyone. <3