Speaking The Unspeakable: To save lives and advocate for change

I’m compelled to say the things we’re not supposed to say. There are many; I will only say a few. I suspect people couldn’t handle them all.

I would be lying to say that I’m not angry. But thankfully anger is no sin; it’s how we respond to it that matters. And I feel the Lord telling me to respond by speaking the truth in love – to do the right thing, even if people make it into the wrong thing. I say these things not only for myself, but for other family, friends, and even strangers who have been through some version of this – some who are also rightfully angry – others who are unaware that they even should be. And I say them for all who have not been through this, but who might if these things aren’t spoken and don’t change. I say them in hopes of preventing those reading this and your loved ones from being next.

I don’t believe my dad had to die this way. Yes, he was battling cancer again, but his cancer markers were dramatically improving. Getting c0v1d at Christmas, in that already fragile state due to chemo, was certainly a heavy blow. But, I don’t believe it had to be a fatal one. Dad, in spite of the serious health battles he’d been through since 2019, had already survived c-d twice without crisis in the past few years with the help of meds we were all told we shouldn’t take or even speak of. But over nearly 3 years, the things that have been most effective for every age and comorbidity, according to what we’ve witnessed, have continued to be fought against and made more and more difficult, if not impossible, to obtain. So this time, we were not prescribed what had helped before, but instead were given what the powers that be have now approved and are promoting. If I understand correctly, this was because “they” have an early treatment to offer now, so it’s even more difficult to find doctors who will prescribe and pharmacies who will fill scripts for the alternatives. The pressure is immense.

I’m not going to try to tell you the “officially approved” med we were given is evil. I honestly don’t know all the implications of its use, though some I highly respect in the medical field don’t recommend it. I can only say from our experience that it did help lessen symptoms for several in my family – though the side effects were far more objectionable for me than what we’d been given before. So my goal is not to persuade people to never take it, especially if it’s your only option. But it should never have been our only option. There were multiple factors that made it torturous for dad to take and not a good option for him. Not to mention the fact that potential rebound of symptoms after using it is real, and was likely a factor for dad.

I had listened to and read the research and testimonies of a number of physicians who were succeeding in helping many people in these past years, taken ample notes, and shared them with others. So in spite of this unexpected development of not receiving some of what we would have preferred to take, we were thankful that we were still at least able to request and receive b u d e s o n i d e (steroid) inhalers. We hoped it would make up for not receiving the other meds. Unfortunately, due to his condition, we don’t know how much, if any, dad ever successfully received. (Inhalers are difficult for those who are very sick to use – if you breathe on/into the inhaler once a dose is loaded, the dose is ruined.)

When dad went into the hospital on day 8, based on my notes from interviews with Dr. Richard Bartlett and others, we began advocating for him not to receive certain things that have been harmful, even deadly, to many, and instead to receive nebulized b u d e s o n i d e – 1 mg every 4 hours. Dr. Bartlett has become nationally (possibly internationally) known for this protocol and has used it, even as often as every 2 hours, to help many overcome critical illness – even helping people come off vents. But we were refused. They gave him only .5 mg every 12 hours (only 2 doses) in the ER to placate us. Even from this small amount dad drastically improved. However, once he was moved to CCU, and then to another room where we could be with him (by the grace of God), we had to fight for these treatments again, given his obvious deterioration once they were discontinued.

So I called the hospital advocacy hotline associated with b u d e s o n i d e w o r k s . c o m, and was surprised to actually find Dr. Bartlett’s sister, Laura, on the other end of the call. Laura Bartlett was absolutely amazing. She and her sister, Barb (a nurse), and others from her team, spent many hours on the phone helping us – even over the weekend. Laura made herself available to us day or night. She was a God-send, who fought for us as if we were her own family.

Through her advocacy, knowledge of hospital protocol, and how to overcome objections and obstacles, after several days, we thought we’d finally received approval for dad to receive the nebulized breathing treatments at 1 mg every 6 hours. It was a compromise, but better than nothing. But our joy soon turned to frustration again when we questioned them and learned they were only giving .5 mg every 12 hours, and attempting to supplement with other kinds of inhalers to make up the vast difference (which we later learned should never have been used due to black box warnings about sudden death). One nurse let slip that this was the dose/frequency approved for CHILDREN. Another ICU nurse (and honorary family member) told us it’s what’s used for MAINTENANCE of disease (such as COPD) – not what is needed for acute illness/critical care.

But they kept Dad at this minimal dose/frequency (except when they failed/neglected to bring a treatment) for 5 days, while we worked relentlessly from morning till night every day trying to advocate for more. Finally, an intern (new to dad’s case) approved 1 mg every 6 hours! However, before even a full day of treatments had been given, this long awaited victory was being threatened to be snatched away (I imagine due to pressure), unless we could produce scientific evidence justifying our request. We had already given a list of scientific studies for the effectiveness of these treatments to every doctor involved, but the dose and frequency that have worked best for Dr. Bartlett’s patients has not yet had a scientific study devoted to it. Those familiar with the politics involved and how long this process can take may understand why.

At this point, Laura B. urged me to reach out to her brother, and to our amazement, Dr. Bartlett himself graciously stepped in to join us in the fight. If you know anything about him, you should know that his list of credentials ought to silence any critic. The next day, he spoke to the doctors and they agreed to continue the treatments. However, by that same afternoon (perhaps tired of our advocacy and resentful of being persuaded), they arranged for dad’s transfer to LTACH (Long Term Acute Care Hospital). We were assured the treatments they’d finally agreed to would continue there. But this did not prove true. Once at LTACH the battle began again. Thankfully, with Dr. Bartlett now involved, the treatments were approved again the next day after he spoke with the new doctor. But by this point, dad was already 3 weeks into the battle.

For some reason, a decision was made that instead of administering the treatments every 6 hours, they would give them every 4 hours during the day, and not at all at night, leaving a 12 hour period overnight with no treatments. I wish now we’d insisted otherwise. After this 12 hour overnight lag, dad ended up in crises both of the following mornings. And with the LTACH dr. living out of town and also working at other facilities, it took between 4-5 hours from the time these crises began for him to finally arrive on site and his orders to be implemented by the staff. By the time he finally arrived the second morning, he told us there was really nothing more they could do.

Dr. Bartlett was graciously on the phone with us prior to and again right after that moment, advising us and helping us sort through and verify what we were being told.

Those of you who know me best (or were receiving our updates/prayer requests) know we were not just fighting this battle in the natural, but were fighting spiritual warfare as well. We were contending with the promises of God, speaking to the mountains, and putting into practice other spiritual principles Jesus taught us in His Word. We were not applying these things as a formula, void of intimate relationship. We were seeking the Lord, with our ear upon His chest, to hear His heart and mind about what was happening. We were surrendered to what He wanted to do, knowing to live is Christ and to die is gain. And up until at least a week earlier, the Lord seemed to be continuing to give us messages of faith and hope that made us believe we would have a different outcome. So that’s the position we continued to contend from.

The evening before dad passed, however, I noticed the words He was giving seemed different. As I held dad’s hand and played worship music over him the last night (while he slept), song after song that played were about death and ultimate resurrection…

Dad was awake to receive a breathing treatment while we were there that night, and his O2 was holding at 90-92 with no supplemental oxygen during the treatment! I told him how good it was to see that, and encouraged him to continue getting better and better. He agreed. In spite of his O2 being at this level, after the treatment, they put him back on a 50% O2 flow, which they’d just started after his crisis that morning… Now I wish we’d urged them to attempt to reduce it back to the 3 liters he’d been at before the crisis instead, giving him a better chance of expelling sufficient CO2.

As we were leaving, I told him I loved him, and though it had been difficult for him to communicate much in the past week and a half, he was able to respond that he loved me too. I’m grateful these were our last words to each other.

When we went to bed that night, rather than assurance of the miracle we’d been contending for, the word Jesse opened to from our devotional book after praying was about “Departures and Arrivals.” We questioned whether through the songs that night and this word, if the Lord was preparing us for dad’s departure. But I wasn’t ready to immediately accept that these messages were definitely from Him and join in agreement with them. I wanted to keep fighting the good fight of faith till I was certain.

But those words did enable me to tell him the next morning, in those last moments as my mom, sister, Jesse, and I surrounded him – while the dr encouraged us to tell him it was OK to leave –

“If you want to keep fighting, we’ll keep fighting for you, Dad. And lots of other people are fighting for you too. This is not too hard for God. But if you want to go on home to Heaven, we’ll understand.”

– and within moments he was gone.

He’d had enough. And I don’t blame him. The past few months had been traumatic, and the past few weeks had been torturous – not just for dad, but for us all. We’ve seen things we can’t unsee, and heard things we can’t unhear – things that will require the Lord’s healing from trauma. But He is able, and already ministering to us about His intention to do so.

As soon as Laura B. heard dad was gone, she was on the phone with us, praying for us, and assuring us that we’d fought valiantly and done all we could. That afternoon, I texted Dr. Bartlett some questions and he immediately called. He listened carefully as I sobbed my way through the conversation, seeking an “autopsy” of the situation – what happened and why – what we could have done differently or better. He was so kind and compassionate, wanting to unburden me and to commend our fervent advocacy for dad. He said we’d gotten more approved than many do – even though it was still less than what we wanted and so late in the illness. He lamented that once people go into the hospital, they’re fighting against the system and things are typically largely out of their control. The counsel he did offer, the regret he did confess, was that he wished we’d been prescribed nebulized b u d e s o n i d e treatments from the beginning of the illness. We weren’t aware of the importance of the nebulizer from the start, thinking an inhaler would be sufficient. But as dad’s situation demonstrated, inhalers aren’t enough for many patients – both in dose/frequency or in their delivery system. Dad couldn’t properly use the inhaler, nor was it enough medicine for him. The nebulized system of delivery (specifically with a mask) and higher dose/frequency would have solved these problems.

I know God is greater than stage 4 cancer; He’s greater than cancer + covid; He’s greater than cancer + covid + the serious medical mistakes and errors (which I haven’t even mentioned) that made dad’s situation even more critical + the unreasonable opposition we faced in the hospital; He’s greater than even death. I know nothing was or is impossible for Him and for those who believe Him, as He said. I don’t know all the answers for why things happened the way they did, in light of these truths, and will continue to work through those questions with Him. But I do know that Dad got the Ephesians 3:20 outcome that we’d been asking for. Heaven is truly the exceedingly, abundantly above all we could ask, hope, or imagine outcome, more than any temporary outcome he could have received here.

So I’m OK – yet not OK at the same time. I’m OK knowing my dad is more alive and well than he’s ever been, enjoying perfection with the Lord, where we all long to be. (May it be soon – Maranatha – Come Lord Jesus!) I’m OK knowing he’s in our future, and not just in our past, and that we’ll see and embrace him again. I’m OK knowing God has us in His hands and has promised to work all things, even this, together for our good as we continue to trust and follow Him.

But it’s hard to be OK about the politicized state of our medical system – the “medical Marxism” as some have called it – and the atrocities and unnecessary deaths resulting from it every day. It’s hard to be OK with the injustice of compelling research and indisputable medical outcomes of reputable and even world-renowned physicians being censored and denied – or the ignorance, arrogance, and negligence of many medical professionals that have flourished as a result. I’m not OK with many hcps feeling coerced to kowtow to political and pharmaceutical pressures. I’m not OK with the travesty of those who have bravely spoken unauthorized truths and prescribed unsanctioned, yet effective, treatments that have saved lives, losing their jobs, reputations, and at times even their board certifications. I’m not OK with patients and family members who refuse harmful treatments and advocate for effective, safer ones being treated like troublemakers, imbeciles, and pariahs. I’m not OK with family members continuing to be separated from their loved ones in their crisis and prevented from being present to watch over, advocate, pray for, comfort, help, and support them continually, as they long and need to do. (I am so grateful we only went through one night of that cruelty, but just learned a friend just went through this with her mom, and we just passed the one year anniversary of the loss of another friend’s husband who suffered through that as well.)

I’m not OK that our experience in the hospital was so awful that even my mild-mannered, give everyone the benefit of the doubt, emotional rock of a husband felt like we needed to call the police to intervene because it seemed as if they were TRYING to kill dad through serious mistakes, negligence, and denial of appropriate care. And there’s undoubtedly more …

We’re painfully aware that these injustices aren’t solely limited to c-d protocols and care – since we also had to fight for dad to receive a life-saving surgery 3 years ago in a different hospital.

And we also understand that these battles over c-d treatments are not restricted to the one we fought for – since many others have presented scientific studies to advocate for other proven treatments and have been met with the same opposition and refusal.

They’ve just told us the c-d emergency is over, but those of us who have lost loved ones in the past 3 years in these unnecessary ways would contend that as long as anyone is being denied the effective treatments that could save their life – the emergency remains and continues to be one of their own making.

May God continue to help us forgive the unforgivable, but also to receive and respond to His wisdom regarding how to effectively advocate for change.

As has been our experience with most crises, we have been both blessed by and in awe of the kindness and compassion of some – while simultaneously being shocked and grieved by the actions or inaction of others. God forbid we focus solely on the latter.

We can never thank Laura Bartlett, her sister Barb, and their team enough for their help and advocacy for dad once he was in the hospital. I know she is/they are saving lives and helping people navigate nightmarish and hellish ordeals. And I can never thank Dr. Bartlett enough for stepping into the fight with us in the end. I know he can’t do that for everyone. His help in obtaining those last-minute victories meant the world to us. They are definitely part of our honorary family now.

I would encourage anyone in this horrific situation to contact their free advocacy hotline and receive their help.

We are also grateful to our pcp for the ways he fought for dad, the doctors who had the humility to listen to Dr. Bartlett and be persuaded to some degree, and for some of the kind nurses and respiratory therapists who helped take care of dad in the ways they were allowed.

At the same time, per Dr. Bartlett’s counsel, I’d prefer to help people never be put in this terrible predicament in the first place. I hope to help spread the word about the effectiveness of receiving nebulized b u d e s o n i d e breathing treatments in the early days of illness in order to avoid hospitalization. Please read the medical journal/research articles about it on their site. Print them off to take with you, or electronically send them to your providers. Listen to the interviews online with Dr. Bartlett and take notes to keep and share. Pray for additional research to be done that will enable the most effective dose and frequency to become standard of care. I’m not suggesting you won’t find yourself still “fighting the system” in some respects, if you choose to pursue this. But at least you’ll have a better chance of finding doctors/pharmacies willing to provide this prior to hospitalization vs. afterward. Please have a plan in place ahead of time so that you know where you can get this treatment early on. There’s a list of doctors on their website who are willing to help if yours won’t.

At times I would be tempted to apologize for the length of what I’ve written, but today I will not. After hearing the things that were shared about my dad in others’ tributes the past few weeks, it’s more clear than ever that my attention to detail and thoroughness in study/research, writing, and even prayer, in part, was inherited from him. So I won’t apologize for them today, and instead offer this detailed post in honor of him.

I understand that I’ve brought up some sensitive issues and pray that I’ve done so without causing insurmountable offense. The Lord bless you and keep you. May He guide us all into all truth and bring us into unity – first and foremost with Him, and therefore with each other, in any areas where we disagree.

Please respect that this is my post about our experience with my dad’s death. Our experience, my feelings about it, and what I would like to share to try to help others as a result is not open for argument or debate. Thank you. With love and heartfelt care and prayers for all 😢💔🙏🙏❤️

Linked resources above:

Advocacy hotline
Scientific studies
List of doctors

Additional important resources:

for documents to complete and sign to inform doctors and hospitals of your wishes and of consequences for willfully disregarding patient rights and informed consent.
Laura Bartlett’s hospital advocacy site

How To Save Your Life When Hospitalized – Interview with Greta Crawford and Laura Bartlett

New Study Supports West Texas Doctor’s Early ‘Silver Bullet’ Covid-19 Treatmentarticle

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