Home at last! Landon was finally released from the hospital after two weeks of doctors, nurses, needles, and tests. We are still awaiting the results of his exit tests performed today (EEG, cranial ultrasound, and blood metals test) but Karen and I are less concerned about those outcomes and are focused on enjoying our first evening home with our son. We listened to music together, took time for some pictures, and organized our home to fit all the new medical equipment we were sent home with today. Even with the added responsibility of temp checks with every diaper change, closely monitored feed intake, and correctly timing medications, we finally feel like a normal family.
With 24 hour access to Landon and a chance to finally sleep with him in the room, Karen can finally rest at peace. Being away from him has weighed on her and I know that these new stressors are much more welcome than the last. Having two hours of our lives back from the commute is a welcome change as well. You don't realize how grueling that time is until you consider what you could be doing with it. Karen plans on using that time tomorrow to do some physical therapy with Little Goat. How lucky is he to have a massage therapist mom that knows exactly how to do all the stretching and muscle therapy he needs? I plan to use my new found time to do some serious studying. I would read aloud to Landon but I don't suppose he has any interest in systemic pathology.
I was astounded again today by the compassion and generosity of my classmates and professors. One of our responsibilities with Landon is to feed him slowly by NG tube so that he doesn't spit up. He is at a particularly high risk for choking on vomit due to his weak swallow and gag reflexes. Additionally, if he loses his anti-convulsant medication in his regurgitation, his blood level of drug could dip and he could suffer from a serious seizure. I reached out to one of my professors for information on where I could locate an auto-syringe (an electric pump that pushes out a measured amount of fluid per minute from a syringe) that would help prevent us from feeding Landon too fast or too slow. Going far above and beyond the call, they found and acquired this piece of equipment for me and delivered it to me on our return from Topeka today. I will keep him/her anonymous but I wanted to express my immense gratitude for his/her continued support.
Inside each of us there is a capacity for great good and Landon's life seems to have mobilized generosity in every heart he touches. People who have very different opinions normally are united by his cause and we have seen first hand the beauty of a community working in unison toward the aid of a friend and colleague. Awed by the blessing of cooperation, I would like everyone to know that I thank God for your presence in our lives and the love you show the world with each day of your lives. I will cut short today and go rock my son to sleep tonight.If you are living by the Golden Rule, I hope you have high expectations for the level of care you're provided with someday when you're in need. God Bless and good night.