Home At Last!! March 29, 2017

We got home late on Wednesday, March 29, 2017. We spent the day, yesterday, Thursday, unpacking and settling back in at home. I am writing this post on Friday.

On Wednesday, Nicholas and I woke up to shift change with a new day nurse, and then we pretty much were left alone for most of the morning. The nurse weighed Nick and he dropped over 5 pounds since the pre-op appointment. She also checked his vitals, and then unhooked him from the monitor and said he didn't need to be monitored anymore. 

The doctors came in for rounds and said they were pretty sure Nicholas would be getting discharged today. It was dependent on the echo, which was happening simultaneously. The doctors said that we would need a follow up appointment with Dr. Wright in Sacramento within the next week or so. I asked how we would know if there were signs of progress or failure and they said that Dr. Wright would likely be following Nicholas closely with quarterly echos. They also gave us some signs to look for that would indicate Nick's LV is struggling. They want us to watch for swelling in his feet, shortness of breath, any indicators that he is self-limiting more than he was before. I feel like it will be hard to see some of these changes until he is more back to his normal self; he is still very tired and very much in the healing phase.

Nick had one final meeting with the physical therapist. They walked down the unit and she took him to the stairs where she wanted to see if he felt comfortable walking up and down, since we have stairs and his room is on the upper level of our house. He did really well, but she showed me how to spot him going up and then coming down, just to be safe. She said she thinks he will do great once he gets back home, and she doesn't think he will need more therapy after he is discharged. She did suggest that he do the exercises she gave him so that he can regain some strength he lost while hospitalized. 

Leaving LPCH! 

We were finally discharged at about 3:00 on Wednesday. Of course we hit heavy traffic leaving Palo Alto, so our 2 1/2 hour drive took over 4 hours. We went out for a celebratory dinner and finally walked through our front door at almost 9:00 pm. It was sure good to be home. 

We kept Sienna home from school on Thursday and had a pretty easy going day, and now we are trying to get a routine started where Nicholas can start getting some school work done and have some structure to his days at home while his body heals and he gets his strength back. 

I will be praying that Nicholas's left ventricle does not struggle and that it starts regaining good function. I am working on a detailed description of what we are trying to accomplish with the PA banding procedure, and why this much tighter band is causing more concern this time around. Stay tuned....