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Day 24 | OCTOBER 04, 2021

Good Evening Friends, Today is day 24 of our new and amazing Life!

Today was a different kind of day in terms of my visitation time with Charlie.

I was informed early on that her scheduled surgery was moved to tomorrow, so I decided to take advantage of that and do some patient advocacy work on her behalf. You May have noticed in my previous post of 2 weeks or so ago, that Charlie was placed off the ventilator for an entire 2 days! And she did great! However somehow she was back in the ventilator on her days off! I did like this step back .

Thank God, Charlie did not suffer any inhalation injury, so her lungs are in perfect shape, so back to my visit, I decided that I would ask questions to the doctors in charge of her respiratory care.

I am not sure how many of you have experience with the hospital environment, but from my point of view, it is a complex, compartmentalized, and confusing system , purposely designed to make it difficult to navigate. That is how American Hospitals are designed. I am not complaining about VCU, they are amazing professionals and are taking great care of Charlie , but the system is powerful and requires constant vigilance on the patient’s family side.

By now I know how to access the right people , I use my case manager , so I texted her ahead of time and once there she already knew what doctors and departments I needed to see, so the first doctor I spoke with was the one in charge of her ICU care outside of the OR , he listed to my request of getting her off the ventilator when back in her room, that way minimizing her risk of pneumonia ( ventilator use can causes pneumonia) . Since Charlie has the ability to breathe on her own and all her other vital signs are stable , there is no medical reason why she should remain in a ventilator, or when her oxygen saturation is 94% on the ventilator and 100% on her own . Based on those facts, he agrees that she should be off the ventilator when in her room, and out of the ventilator sedation is not needed. Step 1 done .

Now to step two, to speak with her OR team about downsizing her tracheae color to one size smaller, with a smaller collar Charlie can speak with the use of a speech valve.

The current size she has, it is too hard if not impossible for her to have the air power to speak, this is where my opinion did not change their minds , since they said it is too risky to downsize her colar now, since she has so many OR trips. I am not a doctor, all I can do is ask and make them think, so step 2 was not successful.

Now to step 3, the speech pathologist, they are the ones in charge of the speech valve , they came and did a test on her using her current size , of course it did not work , so they came out with a partial solution and I was actually dry happy to see them think outside the box! They proposed the use of an electrolarynx device, yes one of those very creepy robot voice machines, but it did work! And Charlie's robot voice came out and we all understood her. It was such a cool moment for me, now the hospital needs to order her such a device and she will need to practice before she perfects the use of it.

So, after spending 5 hours with the doctors, it was time to see my beautiful wife and read your amazing cards! This is our new favorite thing to do, Charlie loves to hear the sender names, and where they are from! Today we read cards from Hawaii, Texas, California of course Virginia. Thank you so much for the sweet messages and kind words of encouragement, they are so powerful! Charlie did great today! She was able to maintain all of her vitals, without any meds, clinically speaking she is very stable. She was a little more tired , since she was off the ventilator since 9 am today, so it does make her tired to breathe on her own, but it is such a good exercise for her body to do the work. I left the host around 4pm today and I was home to make the boys dinner for once , it was a good day! I am happy with the results achieved. I want to once again emphasize, Charlie’s doctors and nurses are amazing professional and kind human beings, they take the time to listen to my questions and more often than not, they do make changes based on my requests and for that I am grateful.

She is scheduled for surgery tomorrow.

Here is today’s lesson, don’t take No for an answer, there is always a way, we may not get what we want, but we can always get a version of it.

In a serious note, Patient Advocacy is becoming part of my new life and I am very passionate about it, off course because I am advocating for Charlie , but it makes me sad to think about the millions of people that end up in a hopeful with no one to speak on their behalf, or even if they have families, they may be too shy to ask questions, or to ever disagree with the doctors, sadly social economic status, and race , have impact when advocating. In order to be an effective advocate, one must be knowledgeable , present and persistent , by advocating it does not mean you don’t trust the doctors or you think that you know more than the doctors or nurses , not at all, it means that you are asking questions and making the doctors and nurses think, look for different ways to care for your loved ones, the so called standard care, is not applicable to everyone one , we all have unique needs, don’t accept the standard care without questioning .

I could give you dozens of examples I encountered in hospitals where if I had not been questioned , the patient outcome would have been different, remember when I said the system is strong, there is a reason for that.

So tonight my post is about Patient Advocacy, it is about giving a voice to the ones without a voice.

Please keep the cards coming, we have only received them !! We need 1000!!! Come on folks! Help us flood the hospital with Love and Hope !

I do ask you tonight, look around you, can you advocate for anyone near you ? Not only at the hospital but in life in general?

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