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Day 91 | DECEMBER 10, 2021

Good evening Friends, today is day 91 of our new and amazing life!

Today I woke up very excited! I had a good night of sleep and I was ready for Charlie’s big day !

The day her tracheae collar would be downsized !

Around 9am, I called her nurse for the morning update, and Charlie did very well the night before and was doing very well this morning, she was scheduled to go into the OR at 10am.

As I was pleased to hear how well Charlie was doing, I had to ask, what time will they downsize her tracheae collar ? Now that she has successfully passed the last 48H without the help of the ventilator.

To my absolute surprise, her nurse told me that the ICU doctors decided that they would NOT downsize her today! But instead they wanted her to do another 48H before checking again, the moment she said that , I felt my face feel warm, I could feel my heartbeat on my neck , I haven’t felt like this is a very long time, I instantly knew, I was Angry!

I was not frustrated, or upset, I was Angry!

For the first time since this journey started, I felt raw and angry, and as you know by now , I let that intense feeling run free in my mind and body. I did not try to calm myself down, all I could ask the nurse was why ? To which she responded, I am not sure , they didn’t tell me and I didn’t question! I took a deep breath, and said, can you please ask me the ICU attending Doctor to call me, I have questions.

So for the next 30 minutes anger raged through me, I was hot , and my mind started to race around , I just wanted to hurt someone, yes ! Physically punish the people that cause me to be so Angry, at that moment I told my self, enough Anger , let’s channel this incredible energy into some something productive and useful, so I dove in into the world of tracheostomy , I learned every possible thing on that subject, for the next 2 hours as I wanted for a call back!

It is just amazing, when you know how to Chanel negative energy into something useful, it is like adding jet fuel into a fire pit .

I ready over 50 pages of medical and scientific papers on tracheae collars a d it sizes.

Around 11:30a, I called to ask about the Doctor's call back, the nurse once again told me she would page the doctor.

I continue with my research at this point, I feel very knowledgeable about the trachea collar subject, so I feel ready to have the most educated argument with the doctors, because in my mind they must have a very good medical reason to explain their decision, I just don’t think there is way, but we shall see, I am ready to defend the downsizing based on medical facts.

By 1:30p no call yet, I decided that I would eat some lunch and make my way to see Charlie , since that is the time I normally leave the house .

I was still feeling the heat in my face as I drove into Richmond, when I was 30 minutes out, my phone rang, and I knew it was the hospital, I was ready to plead my case, but this time, the call was from Charlie’s surgeon and not the ICU doctor, this was the first time , I was not excited to hear from him, but Thank God he had good news, he said that Charlie’s surgery went very well , and that her CEA take for her arms was 60% a lower number compared to her previous areas, but he said it is quite common for arms to have a lower take, since there is more movement on the arms .

He was very pleased and her healing still progressed beautifully, he asked me if I had any questions, I said in a very stern voice , yes ! One question, what is going on with her trachea collar downsizing? I think he could tell I need a very good response, to which he said, I think it is best if you speak directly with the ICU attending Doctor.

When I arrived at the Burn unit, I went straight into the Charge Nurse desk and asked her to page the ICU doctor, and let them know I was waiting for them.

After 10 minutes, no one came , so I asked a different nurse to page the doctor, and finally I saw a doctor that is part of the OR team and I asked her to call the ICU doctor, and within 3 minutes after that call, I met with the attending Doctor, I was expecting one of the regular ICU doctors that I normally deal with , in their grey scrubs .

This doctor was younger, very well dressed, so I calmly asked the doctor, May I ask why you decided that Charlie would not have her trachea collar downsized today ?

She replied in a very calm voice, well can you please remind me of the patient's ventilator status. I responded, she is not on the ventilator, she has been off for the last 48h and that was what I was told, if she stays off for 48H, she would be downsized.

She could tell my passion behind my words and I could see her slightly change her tone.

She said, well if that is the case , she should have been downsized today, but due to her trip to the OR, we just got very busy and now is too late to do it today, she continued to say that she would be willing to revisit it tomorrow, since she will be the attending in the morning.

I quickly said, you and I know that tomorrow is Saturday, and the hospital is not well staffed on the weekends, to which she smirked and said , `` Friday night is even worse.

She swiftly said, let’s do this, I will downsize her tomorrow morning, as long she does not need any ventilator support tonight.

I smiled back and said, well that is not very fair don’t you think?

She did the 48H previously requested, she did her task, why can't she have her ice cream ?

We both laughed, at that moment, we broke the ice, I went on to say, even if she goes back in the ventilator, downsizing her collar won’t impede her from being placed on a ventilator, she can still be connected.

She made her final offer, ok ok, I will downsize her tomorrow at 9:30am, regardless if she goes back in the vent tonight or not. I looked her in the eyes and said, do I have your word that tomorrow, no matter what , she will be downsized at 9:30a, she said yes! and we shook our hands, it was a real negotiation and we both agreed on the terms of our deal.

She said, I don’t recall ever negotiating a procedure with a patient or family member. I said well, we are different, outside of here we are entrepreneurs , we like to negotiate.

After making the deal with the Doctor, I went Into Charlie’s room and told her the good news. She was in a very good mood today. She was very happy and thanked me for arranging the downsizing for tomorrow.

We talked for a few minutes, and I told her how free I felt after our conversation last night, and she also said that it felt so good.

We went in to watch a funny movie and I left after the movie, and since I will be back tomorrow morning, I left a little earlier.

Today the day started a little rough, but became a great day ! I am very excited for tomorrow! I hope the doctor values her word as much as I do mine .

Thank you for your prayers and support!

May God Bless You.


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