Day Seventeen Post Op

Charles's first ride in a stroller EVER, and he loved it.

I am in the family waiting room in the cardiac catheterization unit. Charles was just sedated for his echo which should take an hour, an hour and a half, and then he will be going for his broviac removal which will be another 45 minutes. i am looking at being down here for a total of four or so hours because he will also be asleep for anywhere from 30 minutes to 2 hours after the surgery. Somehow, I am not a nervous wreck about this. Perhaps it is because compared to open heart surgery, it is so minor, but I am a bit anxious because it is still surgery. Tomorrow they will change tweak Charles's ativan and methadone. They are trying to get him off of it safely without withdrawals so we can go home since the ativan is the only thing keeping him from coming home.

Today we went on a walk for a few hours. We explored the hospital and got lost a few times. I bought Charles a pair of pajamas to go home in. (They have Cookie Monster on them!) and we ran into a robot. I was trying to keep him entertained since he hadn't eaten since 3:30AM. (He had an oz of glucose water at 8:30AM.) My poor little man was ravenous. He was sucking on the binky so hard, I feared he might swallow it! lol 

Tim is coming up after work today. He and I spoke on the phone for a little yesterday, and he opened up a little bit. It was nice to actually have a conversation about our feelings. We also talked about the wedding debacle, and we are still unsure about what is going on with that so we will talk more about that when I go home. I am hoping that he is bringing Addison up today. I really miss her. I have been trying to talk to her on the phone lately, but she isn't too interested in being on the phone. She keeps asking when we are coming home. I feel bad because I kept telling her that we'd be home soon, and our stay got extended. It's so difficult to be away from her for this long. I have been sleeping a little better at night when I leave the television on, I noticed. I don't sleep long, but I don't have nightmares. I am hoping that when I get home things get a little easier. I have been thinking about possibly starting online schooling. I need to set up a plan as far as what I will do when Charles is able to go back to daycare, possibly in a year. (Honestly, it is when his heart function nis better, and he is off of the 8 medications he is going home on.) 

The robot. Dun-dun-dun!!!

Speaking of medications, the nurse practitioner and I talked about how many medications he will be on at home, and I didn't even realize that we are going to have to switch pharmacies because apparently some don't prepare the meds he will be on. He will be on lasix, methadone, pulmicort nebulizer, aldactone, captopril, aspirin, plavix, and amiodarone. They also explained that I will have to mix his formula differently because he is on high calorie formula. He will be following up with Early Intervention, a nutritionist, cardiologists, and his pediatrician quite often. I think most people hear that Charlie's surgery went well, and he is recovering well, but they don't understand how much he is still going through and will continue to go through for the next year or so.
At the support group I went to yesterday, the chaplain said something that really made sense to me. When your child is diagnosed with a potentially fatal, chronic heart disease, you are opened up to a whole new world that differs from the one most parents live in. We are learning how to care for a child with a defect. It isn't "normal" parenting, Now that I sit and review yesterday's group, I realize how much it helped. It's a shame there isn't a group in New Bedford for parents of children with heart defects. Maybe there is. I will have to do some research. The good thing is I have my fellow heart moms and fellow ALCAPA moms on Facebook so I have some people who know the troubles of being in this crazy, upside down world. (It almost makes me feel like Alice, going down the rabbit hole and into Wonderland. Eventually, we will return to the "normal" parenting world, but for now, we are on this journey.)
Well, I will update when I have some news. Until then, I am going to browse some birthday party theme ideas for Little Miss Addison.

Well, everything went by faster than expected. He is doing okay. When he woke up from the anesthesia, he was NOT happy. He screamed and kicked and cried and wouldn't take his binky and wouldn't drink his bottle. They gave him tylenol, and he was still miserable. Finally, we took all the wires off of him and swaddled him and walked around with him, and he passed out. We walked up to his room and put him back in his crib, and he is sleeping. I will rip people's heads off if they wake him after that reaction. lol I would have left him in my arms asleep if I didn't have to pee. lol All is well though, and They are going to give him his nebulizer treatment right now.
They are apparently moving someone into the space next to Charlie's. I am pretty bummed about that. I don't like sharing rooms with other people because it just feels awkward, especially since the bathroom is on their side of the room. I know it sounds selfish, but I wish we could request private rooms. Unfortunately, on this  ward, you have no choice but to share. I will update more when he is awake.

Charlie is doing so much better. He ate a seven ounce bottle when he woke up. We went on a walk with Daddy and Addi to see the fish in the lobby and the robot trains. The nurse practitioner came in and discussed the echo results. She said BASED ON THE REPORT (not viewing the echo). she sees "trivial improvements but no regression" so basically there hasn't been much change in his heart function since last week. She said she emailed the echo footage to Dr. Baird and Dr. Rhodea and is awaiting a reply from them to get their opinion. (Dr. Rhodes is who Charles will be seeing after we are discharged as his pediatric cardiologist.) The kicker of it is that while I was discussing it with her, I mentioned how he was on ativan twice a day, and she corrected me. She said they tweaked it to once today. No one told me that. I was told by another nurse practitioner that they weren't weaning it down anymore until tomorrow. She told me they weren't even giving him ativan tomorrow. If he handles that well, we may be able to go home Saturday, our three week anniversary of being up here. To be discharged Saturday would be amazing, but I am preparing myself to be here until Sunday or Monday. I don't want to get my hopes up as far as leaving Saturday, and then we find out that I am really staying a few more days. Today has been pretty crazy. Hopefully, he handles being without the ativan okay. He is really on such a small amount anyway. I will be feeding Charles soon and heading to bed. I've been going to bed around midnight lately, and I wonder why I am always so tired. lol I will definitely update tomorrow. Good night, everyone,