“Sometimes, real superheroes live in the hearts of small children fighting big battles”
I never imagined meeting someone so strong, fearless and full of life. McKenzie has continued doing well, she had several IV lines and her three chest tubes removed on the third day of recovery.
Nikki has been my rock through these last few months, when she had to return to work earlier this week – I didn’t know how we would get through the days to come. She is stronger than I ever imagined and I am so thankful for the life she has provided us.
It’s been so hard to leave McKenzie every night, but I am thankful the Ronald McDonald House has allowed me to stay in a room there while McKenzie recovers. I am right next-door to the hospital and while I cannot be with McKenzie every night, it helps being so close.
We are currently five days past surgery; On the night of day three / morning of day four, McKenzie’s sleeping medication was stopped. On day four, McKenzie’s pain medication was also stopped – however, she was in a great deal of discomfort and not only received her pain medication but received a sedative as well. This did very little for her as she struggled to find comfort. The nurses continued to help comfort her and help me hold her, so I could also try and comfort her. On day five, all but one IV was removed and she no longer seemed to be in severe pain – but her stomach and digestive tract had backed up so much the nurses gave her Tylenol, gas medicine and a suppository.
It’s so hard to believe we are on day six past McKenzie’s Surgery. While she has had some great progress, there is still a lot for me to learn in order to care for her at home. The
Doctors found a small amount of fluid in her right lung and a blood clot in her right leg. She has had a few episodes of high heart rates and is currently unable to come off oxygen.
As the days continue, I look forward to the day this is all behind us. During McKenzie’s surgery, we were fortunate to meet another couple while in the waiting room – they were with their son, Landon. Landon was two months older than McKenzie, he had the same heart repair, genetic diagnosis and other similar conditions as McKenzie. I have had the chance to chat with Landon’s mom a few times and have ran into both his mom and dad in the halls as we come and go to see our children, it’s been nice meeting them as Nikkis return to work was especially hard for me this time.
So, while Nikki works and cares for our home – I will continue working and caring for our daughter. I also will continue dreaming about the days when we’re all back together, healthy and ready to move forward in Our Journey.