I will start off by reporting that Benny is B”H tolerating the medication pretty well, other than a fever which some Tylenol reduced B”H.
Last night was long. Benny needed a blood transfusion, which only began at 1:15 am and lasted about 3 hours. Then his labs were done around 4 and some other “stuff” around 6:30.
Our goal this morning was to have the antibody infusion begin around 10 am, so that after 10 hours around 8pm, we would be able to shut it off and have a decent night. G-D had other plans. The infusion only began at 1:15 pm and is still running.
The term “rare” doesn’t sit well with me these days. I’ve heard it way too many times this past year and I am not quite sure if the definition for the word holds true. The word “rare” is defined as an uncommon occurrence. Why is it, that when things go wrong in the hospital, we are told it is “rare?”
Today, we were under the care of an experienced nurse who has been in the field for close to two decades. We happen to have a good relationship with this nurse as well. Today, for whatever reason,( that really no one has a good explanation for), this nurse lacked that expertise. Connecting and infusing the medications together are quite complicating and requires skill. Basically, there are two channels in which 6 medications can go through. The nurse is required to know which are compatible with which and not G-D Forbid mix them up or cross the lines. B”H there was another nurse in the room reviewing all the lines that were connected to Benny and realized that a few of the lines had been incorrectly connected to the right place. B”H the pump was not turned on at the time and Benny was able to avoid any discomfort and danger. It took over one hour before it was all straightened out. It was a tense hour filled with a great deal of anxiety and lots of prayer that everything turn out safely.
The remainder of the day consisted of different nurses coming in to see if we were OK from the whole ordeal and being told how “rare”it is. I realize we are human and we make mistakes, however, when my child is the one in jeopardy as a result of human error, I will do all I can to ensure his safety. There was a sense that I was uncomfortable throughout the day, but luckily the nurse had a colleague with her the rest of the day, checking on the work.
We hope and pray tomorrow is an easier day and that we can get the medication up and running first thing tomorrow in a safe and timely manner.
Benny is asking to go home now! It’s so sad.
This morning we took Benny outside for a minute so he can feel the rain fall on his face. The rain in the month of Iyar are known to have healing powers. I hear the downpour outside as I write this post. IY”H let it represent endless Bracha that Hashem is bestowing upon all of us and especially those in need of a complete Refuah Shlema.
Benny tried carrying the Giraffe out of the hospital gift shop.