B”H Benny’s sedation has been removed this morning. Unfortunately, we are not going to be discharged for Shabbos. Benny has to be monitored to make sure the withdraw from his medications agree with him. So far he drank some apple juice and ate his favorite food, a challah roll.
We are grateful to have been in the best of care this week. CHOP is one of the best hospitals in the country. That being said, doctors are human and some decisions made, when looking back would have been done differently had time been on their side. B”H there won’t be side effects other than having to spend more time in the hospital than anticipated.
The doctors B”H are pleased with the way treatments are going aside from the bumps in the road. One thing we did learn in the hospital was that Benny is a FIGHTER. The doctors in the PICU (which is a critical care floor) has never administered such a high level of sedation without having to assist in helping their patients breathe. B”H Benny was strong enough to breathe on his own. Fair warning…. he’s one kid you don’t want to pick a fight with!!!
At this point Benny is regaining his energy B”H, as ours is depleting. It was too difficult to rest this week, while he was. Now is the time he needs us the most and we are wiped out, physically, emotionally… Hashem please give us Koach (strength)!
Unfortunately, we will not be with our children and extended family as they all celebrate our cousin Zachary’s Bar Mitzvah this Shabbos in NY. G-D knows we tried and turned over every stone that was available. It just was not meant to be. Mazal Tov! Good Luck and enjoy.
Thank you to all the visitors who came to the hospital to give Chizuk (support), toys, food and a warm embrace. Thank you to the outstanding Bikur Cholim and Philadelphia and Chai Life Line for helping in every step of the way.
Please continue to have Benny in your Tefillos as this week showed us all to clear that he is still very much in need of our Tefillos.
written Thursday night:
Quick update. It’s my turn to sleep and Ari is back on guard duty. Today Benny’s counts of radiation fell significantly. Enough for him to technically be discharged from the hospital. The lowest the level he got so far is 4.8 at around 6 pm. Being that he is in the PICU and not on the main oncology floor, the procedure for release got complicated. What else is new? In a nutshell, we need Benny’s numbers to now drop to below 2. For him to come out of sedation with no side effects. For him to wake up with a hearty appetite and for him to have Koach to run down the halls and ride the IV poles.
All of my family will be in NY this Shabbos celebrating my cousins Bar Mitzvah. All of the family except for us at this point. I am hoping we can change that outcome through extra special Bakoshos (requests) to Hashem and see where it will take us. I really hope Benny will surprise the Dr.’s tomorrow in ways they never saw possible as they continue to be amazed by him daily.
To all those who sent greeting cards, thank you. For those of you who haven’t yet contributed to decorating Benny’s room please do so.
I’ll IYH continue tomorrow with both eyes open, not one!