9 am Thursday,
Benny and Ari are now sleeping comfortably B”H. At about 2:30 am things settled down, the coughing subsided and Benny fell asleep. I’m not quite sure what happened first. Ari spent the night on the chair watching Benny. He was able to complete the entire Sefer Tehillim in that time. I went to sleep on the parent bed (bench) near the window.
Although, my intentions were to finish this post in the morning, Benny woke up soon after I began writing this morning. The first thing he requested was, “home” and “out.” As soon as I was able to calm him down by looking out the window, the nurses came in to start today’s medication. That required him to get back to bed and be connected to the monitor. He was not budging from the window, so that’s when I became his advocate and said, “you can’t expect a two year old to stay in bed for the next twenty hours, please move the monitor closer to the window or check his vitals more often, or I’ll watch the monitor (after all I’ve trained to be a nurse for over a year now!), or have someone from the hospital come in and entertain him, because I am out of energy.” After 15 minutes of negotiations, they got the message and agreed to check his vitals more often and started the meds.
Benny was active throughout the day and thanks to his brother Joey, Bubbie & Zaida, a few volunteer’s from the hospital, a visit from Sara Leah bearing doughnuts, after school visit from siblings, Yocheved, Rifka Basya, Shmuel Tuvia, and friends, Alti, Leah, Yaeli, he was in a good mood.
After about 4 1/2 hours of treatment, “the cough” started up again. Unfortunately, it didn’t stop and the doctor on call ordered the medication to be turned off. At the time we couldn’t reach our primary oncologist (she’s on vacation) and had no way of knowing how this will affect the long-term outcome. After several emails, we did get a response that not all patients in the past were able to complete this cycle and B”H are in remission.
B”H the coughing finally stopped about an hour ago. It lasted for about 4 hours and wasn’t stopping, even after multiple breathing treatments. After numerous consults with the resident, fellow and attendee, we were told to wait it out. Then I thought, “homemade chicken soup.” I immediately contacted my friends and within an hour Shoshie and Aliza were at the hospital with homemade hot chicken soup and noodles. I told Benny it was on the way and he was so excited. Unfortunately, he fell asleep before the soup arrived. It must’ve been just the thought of the soup that cured his cough. Thank you, I enjoyed it for dinner, but saved some for Benny in case he wakes up.
He is now officially disconnected from all medications and machines for this cycle. B”H!!! He is now sleeping peacefully, wearing his dress shoes, two ties, a dress shirt and pants. I’ll have to slip them off him once he’s in a deep sleep IY”H.
Benny did not complete the 40 hours of medication he was originally supposed to receive this week. I’m not quite sure how many hours he did get either. We did everything we possibly could’ve. Bottom line, he got what Hashem wanted him to have. He got what he needed. For some reason Hashem chose our Benny to endure this pain, especially this week, but Hashem also said enough! True, Benny did not receive the full 40 hours, but maybe the remainder is up to us to make up.
After last night’s post, a cry for help, I received a bunch of emails, many from people I never met. All stating how they follow Benny and what they are doing to bring about his Refuah Shlema. Maybe that’s why Benny’s been coughing so much, he’s choked up from all the support. The nurses must wonder, why I’ve been crying all day every time I check my email. One letter was from a follower, who Googled Refael Yoel Ozer and came across Team Benny. She instantly signed up and put Benny’s name on every Tehillim list in her community. Another stated that, at the Peekskill Dinner this evening, with over 1100 people attending, Tehillim will be said for Benny and Elimelech ben Basya, WOW!!! I just did the equation, 1100 divided by 60 (minutes) equals 18 (.33) hours. I will know tomorrow how many hours Benny was short of getting his full dose, but 18 is our magical number, Chai = Life. We’ll take it.
As Benny was disconnected from all medications this evening, around dusk, I noticed a rainbow outside. I’ve never seen a rainbow at dusk before. Although, we don’t point out a rainbow when we see it, it is symbolic from Hashem that he will not destroy us either. IY”H Benny will make Hashem proud and continue to help repair the world to bring back its’ Shleimus (wholeness) entirely for 120 years.
Five days to Matan Torah IY”H. Let’s make each and every day and night count to its’ fullest. Benny gave it his all this week, now it is time for him to get ready; go shopping for a new tie and get his hair done!