Dayton, one of the dogs in the therapy program came and visited Adam today, perked him up so much he tried jumping out of his crib!

Trying to get Adam a little more active but it’s hard with his chest tubes. Doesn’t look like they are coming out today, still draining more than they’d like. He was able to come off his last IV though. One day at a time.

The kids surprised me with a little birthday party in the activity room this morning. Happy to be able to spend time all together.

Trying to convince the kids to go to a Red Sox vs Tigers game this weekend but that might be a tall order.

So, Adam continues to improve. Trying to manage his pain, getting the tubes out will be a huge relief for him. His heart rate is a little higher than they’d like but could also be because of pain and tubes. He finally ate some food yesterday, first food since Sunday. Hasn’t had much of an appetite but he’s getting there. He should start to feel much better soon!

Dayton, one of the dogs in the therapy program came and visited Adam today, perked him up so much he tried jumping out of his crib!

Trying to get Adam a little more active but it’s hard with his chest tubes. Doesn’t look like they are coming out today, still draining more than they’d like. He was able to come off his last IV though. One day at a time.

The kids surprised me with a little birthday party in the activity room this morning. Happy to be able to spend time all together.

Trying to convince the kids to go to a Red Sox vs Tigers game this weekend but that might be a tall order.

So, Adam continues to improve. Trying to manage his pain, getting the tubes out will be a huge relief for him. His heart rate is a little higher than they’d like but could also be because of pain and tubes. He finally ate some food yesterday, first food since Sunday. Hasn’t had much of an appetite but he’s getting there. He should start to feel much better soon!

Today is a rest and build strength day for Adam. He was moved out off the ICU yesterday and put on the main cardiac floor. He is doing well and continues to get stronger. 

Carson and Grace are able to visit now and it’s the best medicine Adam could get! He perks up, talks more, laughs and smiles when they are in the room. It’s refreshing to see that.

We were able to get Adam out of bed today and to the activity room on the floor, we played catch for a long time and he got to play with some toys and get out of his room for a bit. 

We are hoping he gets to remove his chest tubes tomorrow, he is still draining more than they want so it won’t be today. He will feel a lot better once those are out.

Carson, Grace and I have been exploring the hospital for several days now. Grace is a regular at Seacrest Studios and loves going on the radio and TV with them.

Carson has been spending time watching YouTube so he can start his own fidget spinner business and drawing his own Captain Underpants comic books.

And me? I’ve found my next job if the IT thing doesn’t work out.

Today’s plan: get discharged from the Cardiac ICU and move across the hall to the main cardiac unit!

Adam had a good night and slept pretty well, no issues. I just got to the hospital and switched out with Sarah, the music therapy program was in Adam’s room singing lullabies to him. Such a great program. They do so many things to make these kids as happy and comfortable as possible. Child life also came in to see what he needed and help us prepare Carson and Grace for seeing Adam later today. The pictures I’ve posted are pretty tame but his chest has a lot of stuff that might scare them.

We’ve requested music and dog therapy for Adam the rest of his stay.

Carson and Grace got good sleep last night. Really can’t ask for more of them, they’ve been great through all of this!

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Adam is having a good day. He is alert, talking, and watching lots of Disney Junior in between naps. 

They just got him out of bed and he took a few steps and met me in the chair, where he promptly fell asleep. 24 hours after his destats he is walking! He’s a little nauseous but that’s expected.

So thankful!

Carson and Grace are having a great time and are handling everything well. The child life program is amazing and the family room is a great place to be, considering. 

Yesterday was long. They extubated yesterday afternoon and then he started to get extremely aggravated, hold his breath, and his oxygen levels would drop to single digits and he’d stiffen up. Originally they thought it was seizures but he’s just really upset and holding his breath.

I’ve never been so nervous as when I saw this happen and 30 doctors and nurses rushed into Adam’s room to help. It happened 4 times before I left for the night.

The surgeon came in and he is still very pleased with everything. They figure Adam is in some pain, coming out of the anesthesia, and a stubborn 2 year old.

Jason and Jinhee dropped us off at the Yawkey House where we are staying. It reminds me so much of the hostels we stayed at when backpacking around Europe in college. Carson and Grace got good sleep, until Grace fell out of the bed, then Grace curled up with me on the fold out chair. 

Early report from Sarah is that Adam had a pretty quiet night, “quiet enough for both of us to get some sleep.”

So we will chalk that up as a win. He has been drifting in and out of sleep and recognizes Sarah and me and asks for things, which is good.

The kids and I are going to get ready and head to the hospital soon.

Sarah and I are in Adam’s room and he looks pretty good considering… they are planning to take out the breathing tube shortly and get him breathing on his own again.

The 48 hours post Fontan (type of heart surgery he had) are critical and this is one of the first steps in that process. He is starting to open his eyes and is somewhat alert so those are good signs.

Meanwhile Carson and Grace are hanging out with Jason and Jinhee at Seacrest Studios at the hospital.

The surgeon just came and talked to us. They are done. Everything was a success and they are wrapping things up before taking him to the ICU. Surgeon said it is one of the best case scenarios we could have hoped for!

Will get to see him in an hour and a half. 

❤️❤️❤️❤️❤️

Adam is on the bypass machine and the surgery is going well. 

We will get another update at 12:30.

Met the surgeon. Toured the cardiac ICU. Also met the mail delivery robot. Leave it to the Harvard kids… Now getting our badges.

They just called and the surgeon has made the chest incision. Working to put him on bypass now.