Thursday, December 8, 2016
And fight we will.
Today was a blur. I can barely remember how it began at this point. I knew that the plan was to take Rowan to Interventional Radiology for him to have his infected central line pulled, and to have a temporary picc line placed. That was supposed to be all that was really on the schedule for today though. He asked for his Chrissie lion, and was ready to go for yet another sedated procedure.
But things can change...quickly.
In rounds they announced that the fluid that was taken from his lungs during the BAL procedure, a little over two weeks ago, had finally grown and been identified. It was a type of Aspergillus. In my mind, that is what we had been expecting it to be, and that is what we have been treating it as. So I did not think too much of the announcement.
The nurse and I started giving Rowan his morning meds, and suddenly, I noticed a different kind of buzz around his room. Three or four additional staff members arrived. Then there was discussion of intubating him there in his ICU, to make sure he was stable before he was transported to have his line pulled and a new one placed. More equipment was brought in.
A resident, a fellow and an ICU attending joined us. Nurses started moving things around the room. Then there was more talk of leaving Rowan intubated after the surgical procedure and sending him to radiology for a CT scan...a full body CT scan with contrast. Emergency meds started being drawn up. Another ICU attending joined the group. Another nurse stationed herself at the computer to start charting everything they called out to her. Rowan's bed was tilted into position so he could be intubated. Two respiratory therapists came in. The vent was set up, oxygen masks sized, oxygen turned on. Medications started being administered.
All throughout this time, one of the doctors was talking to me about what they were going to give him as they placed the breathing tube and put him on the vent. He told me step by step what his plans were, but the big picture still didn't start sinking in. That would come later, after Rowan was wheeled out of the room on his bed, as they bagged him on his way to the procedure room...
Rowan...amazing Rowan, was never scared throughout any of this. The buzz of activity did not startle or spook him. He was so calm. He told his joke of the day to the nurses as the doctors and respiratory therapists got into place. He rated their jokes. He even gave one nurse a 5 out of 5 for her funny joke:)
Then, as everything got started, he simply watched and asked questions. "Ok, what are you going to use to put me to sleep?" Then he started making his own personal requests. "Please don't give me ketamine. I won't do it. I can't stand that medicine. It messed me up. Please." Then, as they started administering the first drug, "You know I need more sedation than most people, right?" After multiple doses, of two different medications, he wanted to know, "Ok, what's your back up plan when this doesn't work? Because I'm not asleep yet...not even close." It was so funny. He knows his body, he is so used to these processes, he does not fear this place or these people. He had peace, and he trusted, but he wanted to be involved, to know what was going on...until he drifted off finally, and they placed the breathing tube.
After he was placed successfully on the vent, the settings appropriately adjusted, and his blood pressure was stabilized with the drip, they were ready to transport him. They wheeled Rowan out of the room, and headed off to his surgery. Then I had time to contemplate...what exactly had changed, that made all of this start happening so quickly, and why would he be going to the full body CT with contrast immediately afterwards?
I am beyond thankful for a medical staff that is approachable, that I trust in their abilities, and that I believe will shoot straight with me when I have questions. Today was no different. I asked the ICU attending, "Tell me the truth. What is the deal? What has changed? What are we worried about?" He told me. And he didn't hold any punches.
Without getting into a lot of medical specifics right now...the fungus in Rowan's lungs is indeed Aspergillus, but what I didn't catch in rounds is that the specific type is not a typical Aspergillus. It is rare. It is dangerous. It is resistant to normal singular antifungal treatment, even the big gun that we had been using. It is hard to eradicate. It is often fatal, especially in the immunocompromised. There are only 20 cases in the medical books. It has a 50% mortality rate.
World turned upside down again.
Rowan was gone for over 2 hours, between transport, line removal, line placement, CT scans and transport back to his ICU room. Multiple doctors came to tell me what they were worried about, to explain how serious this was. We discussed things I never wanted to discuss. One asked my opinion about moving him back closer to home if things started getting worse fast. I wanted to vomit. He went through a prioritized list of the hurdles Rowan needs to jumped to make it through all of this. Another doctor explained to me, just how much the results of the CT would matter. If it lit up, with the fungal infection having spread to other organs or systems...that would probably be game over. Decisions would have to be made, regarding quality of life, continuing treatment, etc. If it was still contained in the lungs, we would expand coverage and fight like heck...but, we would not be out of the woods. It was going to be day by day, step by step, and he would be in the fight of his life.
I waited. I thought. I googled. I called Brian. I cried. I messaged a doctor back home in Texas for her opinion. I repeated the words my Mom shared. I googled a little bit more. I prayed. Then Rowan returned, and I kissed him, hugged him, prayed over him, stared at him, cried for him, smiled at him, and made promises to him under my breath.
The number one thought that kept crossing my mind was: "He's not done!" I just wasn't ready to accept that this could be his fate. His story is not over. He has so much living to do. So many people want him to live. He inspires more and more people every day. Why would he make it this far, and have gone through this much, to have this be the end result. It just didn't compute.
Then, it hit me like a ton of bricks: "Give it to God!" It isn't for me to say regarding how much is too much. I don't get to decide Rowan's fate. I didn't write his story. God did. Fair or not fair, it isn't up to me. I can help him fight as hard as he can. I can do everything in my power to support him and advocate for him...but I can't choose the ending. As hard as it is, I have little control over the outcome. Rowan has taught me, and has said himself: "I'll be fine...either way".
When I started thinking that way, the room became more peaceful...I became a bit more calm. The tears slowed down. I still wanted to vomit... but I knew I had to stop freaking out in my own head, and I had to trust God. Trust God like Rowan does...always. Trust the doctors like Rowan does... always. Trust Rowan's will to fight and live...like Rowan does...always.
Rowan...amazing Rowan, thank you for the life lessons you have given me every day of your difficult life. Without your strength, I couldn't be strong for you. Without witnessing your faith, mine would not be nearly as firm. Without experiencing the peace you exhibit, I could not fathom having an ounce of peace through any of this. How you handle these struggles is preparing me for the rest of this path...as difficult as that may be. Most importantly, you chose the name "Hope" and I am hanging onto that with everything I have.
And now, some results...I learned tonight that the CT scan shows that his brain is clear, his liver is clear, his spleen is clear. The fungal infection appears to be limited to his lungs. There are changes since the last CT scan... the previous nodule has changed in shape and size, there is a new nodule, and there are questionable areas at the bases of his lungs. But, it is just in his lungs. Is that still dangerous? Of course. Could it be worse though? You bet. Had it spread throughout his other organs, we may not have options. Since it hasn't, we will try everything we can to beat it. He is now on 3 different major antifungal medications at the same time, in an effort to start attacking the fungus. There are multiple teams and specialists involved, and they have been pow-wowing throughout the day and evening. They are also talking to the surgeons about surgical options, if there are any. And we are praising God that this is not the worst case scenario...we have been given a chance to fight this.
And fight we will.