Update: Day 3

The main focus of the past 24 hours has been getting the "right" coctail for pain control. She just went off the morphine drip iv she'd been on since surgery and pain is being managed with Toradol, Tylenol with Codeine, and Oxycodone now. We still have the backup of morphine boluses if needed. So far, this is working :)

Her spirits are up today due to the fact that her pain is being managed better as well as she's been eating and drinking some. She's taking Miralax (hopefully she'll be able to poop soon) and Redenidene (for tummy troubles). She's down to 2 liters of oxygen and is satting 85. She had labs this morning and did not enjoy that poke but they are so good here. Children's staff is helpful and awesome. The major achievement today has been getting her moving and not just confined to bed- at 6 am we had to take her down for a chest x-ray and since she has 3 chest tubes, oxygen and a medicine tree, it took 4 of us to wheel her down there in a wagon. Her x-ray showed a pleural effusion in her right pleural space but the team felt it's small enough that the Lasix she's on should take care of it or her body will just absorb it. The movement from all of this action also caused her to dump 120 mls just from that right chest tube. This is a ton! We've learned that her drainage is moderate, some kids put out a lot more and some are less at this point in recovery. We'll take the average chest drainage output. She still has all 3 chest tubes in but lost her morphine drip thru iv late this afternoon. This is great since she's been showing some side-effects from the morphine- ITCHING. Luckily daddy took on the duty of itching her, she looks like a little pup, stretching out, moving her arms with eyes rolled back. He's even sang his own rendition to her while he does this itch therapy--"itchy itchy spider." She took some Benadryl for this, hopefully it will help.

Even though Maddie has done amazingly well just 48 hours post-op, this has not been easy at all. It sounds all great moving out of the CICU but was difficult for her. Until later today, she has been so miserable, sad, depressed and irritable. Nothing made her happy and she was so uncomfortable. Luckily, with this combination of pain meds, she's perking back up. I've taken the brunt of her frustrations. As most of you know, Maddie is a mommy's girl. She and I are very close so I guess it's natural she'd take it out on me. I'll take it if it helps her get better. She's yelled at me a few times to leave her alone, she's told me I'm hurting her and to stop it, and today she shared with Nany while I went to take a nap that "my mommy is so mean to me". Yes, I've been teary over this. It's hard not to have my happy, chatty Maddie. I've hated seeing her this sad and in this much discomfort. I've gotten plenty of scowls and glares. She does let me cuddle with her, kiss her and hold her hand though. Just so happens that I am the one to explain to her what the nurse is asking, gives the directions/medicine or helps hold her for it.

At rounds today, the team explained that in order for these kids to have a smooth post-Fontan recovery, they need to be pushed. They told us she needed to get out of bed today and sit in a chair, sit up in her bed as much as possible to help move the fluid around and out. This also helps them with expanding their lungs and breathing more deep, which in turn helps with the new Fontan circulation. We've listened to their orders and Maddie's been moving, sitting up and responding to these demands quite well. I'm so happy for this. She tries to move herself for comfort, has sat up on her own in bed without any support to grab things and even scoots herself back up when she starts sliding down the bed. We're so proud of her. This should help in her recovery. We also asked if she's unordinary for a 1 day CICU stay post-op and no, this is not uncommon. This is how Seattle Children's prefers to do their fontan and is the goal: get them extubated before leaving the OR and onto the floor as soon as they don't need that life/death care that only the CICU can provide. Once they lose certain meds and lines in the CICU, they push them out. That is what happened to Maddie...she's always been quick at these things, it shouldn't have surprised me. She is such a trooper and tough little girl.

We have been able to chat with the boys each day and Carly helped set us up on google video so we could talk/see them live on the computer. The boys talked to Maddie this morning but she wasn't feeling so hot at the time and just sat staring at the computer, tears welled up with a very sad expression. She asks about the boys and is definitely missing them. Of course they're having a blast staying with the Busters and Pa & Grandma Allred. Jace had his first baseball game of the season tonight and Aunt Lesa videoed him and sent it through our cell phones to watch his hit. That was so nice for us. Cade got to spend some time with cousin Randi at Grandma's today which was what he's needed. With Maddie being on "house arrest" this past month, poor Caden was too. Preschool was over and we minimized his contact with kids since I was paranoid of her getting sick before surgery. Jace's teacher sent us a wonderful email last night about how they'd been sharing character traits in his 1st grade class and Jace shared that Maddie is his hero, her best trait is her "sweetness". He shared with his classmates about his baby sister and was so cute about it. He even shared that Maddie doesn't even have to use the toilet in the hospital....her pee just goes in a tube. He was pretty impressed with that foley catheter I guess. So funny. We're looking forward to seeing them tomorrow. I know that it will be great for her!
Sitting up in bed today- this was major progress!
the three chest tubes...draining the space around the heart and lungs is an important part of the healing progress after the Fontan. One IV left, incision looks good, and leads to monitor heart rate, O2 level and respiratory rate
each chest tube drains into one of these boxes. The color has changed from dark & bloody to a more yellow, clearer fluid which is a good sign of healing after surgery. The drainage is calculated throughout the day.
Sitting in a chair on Nany's lap!!! Mom brought over some of Maddie's books and read them to her...she loved it and perked right up. Mom has been a wonderful help here--running to grab stuff for us, doing laundry, sitting with Maddie while we go take a nap or eat, spoon feeding Maddie (she only likes Nany's style on this one) and grabbing coffees and snacks. We've been laughing that she's our personal assistant. It truly take a team of people to do this, especially right after surgery and moving to the floor. Tomorrow she'll be here while Bry and I head over for our prenatal echo for the baby. I'm 16 weeks along and look forward to getting this over with, it will be with Dr. Meg Vernon, same doctor who diagnosed her! We love Meg.

eating supper tonight- her favorite, noodles!