Wed, 10:02pm

I'm back at the hotel. Tony and John are in the ward on 7C (telemetry, where all the pediatric cardiology surgery recoverees go).

Today was a big day. John is still with his chest tube, pacers, and left-hand IV. He has to wear a little box attached to electrodes on his chest that the nurse hooks up every four hours to get his vitals. He has to wear the blood-ox sensor. He is coming off the narcotics, and this afternoon was rough.

After telling us that we would be in PCICU one more night, they came back and said they had a bed for us in 7C. So they moved him at about 6pm. Not a good time of day for a toddler, particularly one who is cranky, tired, confused, overwhelmed, and recovering from two surgeries.

He did a really good job as usual. He is really starting to experience some discomfort since he is coming onto regular pain medicine, as opposed to the really good stuff. He just needs rest, rest, fluids, fluids, and he has been fighting both. My dad reminded me that on Monday when he needed to eat and drink he did, so I'm trying to remember to trust that. He did eat 2.5 chocolate chip cookies today, as well as some apple juice, a little pudding, and a little jello. So far he has kept it all down.

He had a hard time letting go to go to sleep this evening. Tony and I finally just started making up Tony's sofa bed and talking about this and that, and John was able to relax enough to go to sleep. He's just having trouble getting his mind off his own discomfort and confusion, it was a reminder that sometimes the best distraction is everyday stuff...

Tony's holding his own, hoping he will get some sleep tonight. Even though the move is rough, it is a vital step, and will hopefully help make it easier to care for John so that the burden doesn't fall completely on Tony's shoulders. We can eat in the room, there's a phone, and we don't have to leave for shift changes and rounds, etc.

They were set to give John some IV medicine (lasix and torrodol? for pain) at 10pm. Hopefully it will not rile him too much. He will then have to have his vitals taken at 3am. He has been strongly resisting the blood pressure cuff, but we were able to have some limited success with it at 9pm. We counted up to and back down from 20 while it was going to give him something to focus on. Like everything else, it worked this time, and we'll try it next time...

I feel slightly discouraged on the surface, just because I got caught out by my expectations. Overall, today was a really great day because we made very large steps forward in recovery: removing lines, eating and drinking food and keeping it down, peeing in the portable urinal, moving to the 7C ward, and even playing with a balloon and his cars a little bit. We actually had some smiles today.

I just hope, hope, hope, and pray that the two boys can get some good sleep tonight.

BTW, John has his baby (stuffed golden retriever) and backup baby (mom likes to have two, just in case) and they are named Twohy and Keats today.