The day my son was released from the hospital after his first round of chemo (a 5 day round that with complications led to 22 days in hospital), I came home to find my wife frantically working on Excel with the hustle and bustle of a full house exploding around her. There was a lot going on, but it was clear that what she was doing was important. The kids, who had not seen her in a long time, were siphoned off into another room every time they would show up to hang out with her.
What was she doing that was so pressing? She was making a matrix of all of the medications that needed to be administered to Liam.
I found this odd. How many medications had been sent home with him? Quite a few. When it was broken down on how many doses he is getting a day there are thirty-one. Thirty-one different things to keep track of. Twenty-nine syringe cleanings. Thirty-one administrations by mouth with differing volume amounts.
As I watched Jenn frantically come to terms with the reality of this situation, i.e. that there were no nurses to administer and keep track of all of the medications that Liam needs, I had the stark revelation that many parents out there must not be able to keep all of this straight. All that the discharge paperwork said was which medications he was on, the doses per day, and when the last dose was given.
This seems like a poor system. We have figured it out, but perhaps there is a better way than, “Here you go. Good luck!”
Our experience at Children’s Medical Center has been very positive. The medical professionals (doctors, nurses, technicians, social worker, child life specialist, music therapists, physical therapists, kitchen staff, janitorial staff, volunteers, etc., etc.) have all been wonderful. They all created a very safe bubble for Jenn and Liam; however, I think that the transition from the hospital to home has been a little more like the bubble popping than staying in the bubble and floating home on the breeze.
It is good for the two of them to be back home. It has been a wonderful time for me to regain some of the sanity that I had lost, and I enjoy interacting with Liam all of the chances I can get. When he is home, I get more time with him.
The bubble with all of its iridescent protection returns next Wednesday 21Sept2014 when chemo round 2 starts.