A lot has happened since yesterday’s post and I am so grateful to report ,IY”H encouraging news from this day forward.
It is about 2 hours before Shabbos, I am pleased to inform you that I am finally resting in my bed. We were told that this week would be intense, but I don’t think it’s possible to prepare for no sleep, 5 nights in a row.
Last night Benny’s infusion ended around 11:30. Tshere were several more medications he needed that lasted until 3 am. In between infusion, as part of the clinical trial he is in, he was scheduled to get an EKG. This was set to take place bedside. At around 11:45 the charge nurse, along with our night nurse came in to put leeds on Benny, 6 across the chest, one on each wrist and one on each ankle. Benny was somewhat sleeping, but when the nurse began to connect the cables, Benny became hysterical. He immediately pulled off the stickers on his wrist and managed to pull a few more. After 10 minutes of crying, the charge nurse called off the test and said he will have to “abort” the test. I was very concerned because since this is a clinical trial, the only way to receive the medication is thru this trial and if we don’t follow protocol than Chas Veshalom (G-D Forbid) we may no longer be eligible. We were unable to reach our doctor. at midnight to answer our concerns. The nurse said that Benny was uncooperative because he didn’t know them. She went so far as to say, he didn’t know them because we would refuse care (vitals) for him in the middle of the night, going back 8 months. Maybe 3 or 4 times, we asked the nurses if they could push off vitals in the middle of the night to a more reasonable hour so he can rest a bit. I couldn’t believe what she was saying. She was hung up on 8 months ago and says Benny is uncooperative. I said to her, he’s been up since 5 am with 105 and fever off and on, the remainder of the day. He finally fell asleep at around 10, and now he is woken up. Of course he is going to cry and scream. Unfortunately, I couldn’t sleep the remainder of the night, wondering why this nurse has it out for us. After speaking with Ari on the phone, trying to work out what we could do next to calm Benny, I said, it’s obviously what Hashem wants. If he’s out of the trial its Gam Ze LeTova and if it turns out ok, then B”H we will continue treatment.
Last night, I prayed the time would pass fast and prayed for a “shift change,” which occurs at 7 am. At about 5 am, I asked the nurse if there was something I did to offend her. She began to tell me how frustrated she was with Benny, how she’s only trying to do her job and he’s not letting her. Then she went on to tell me that some nurses connect with some families that others don’t. Basically, we were the family that she didn’t connect with. How horrible is that! One thing for certain I am going to do my best to keep her away from Benny again. She is not going to have the privilege of being part of his Refuah process. It was the only time he really screamed all week. No pulling wool over his eyes! He picked up on her feelings or resentment even in his sleep.
The “shift change” occurred, and in walked Cara, the nurse from yesterday. She wasn’t supposed to come in, but got a call at 7:10 this morning asking if she was coming. She said she wasn’t planning on it, it wasn’t on her schedule. B”H she worked it into her schedule, just in time to be able to get Benny ready for discharge. I was so grateful that Hashem sent us the B’samim at the very end of our long week.
It’s strange how when you are experiencing something pretty difficult to begin with, and then you come across additional bumps in the road, their is still is hope and good and B”H this weeks outcome turned out on a positive note.
As we were told Benny would be going home, we received a text and shortly after an emotional call from Michelle, telling me her baby called out, “Mommy” and responded to her voice. This special nurse Cara, was in the room at the time, and joined in, as we all cried.
May we all continue to cry from B’soros Tovos (good news).