Decisions

WARNING: pretty detailed post today about uncomfortable talk 

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It would have been very foolish of me to think that choosing to pursue further chemo would not come with all sorts of strings. 

So we are currently headed into the second day of chemo. Currently Emerson is doing very well. Still playing and laughing. Attempting to crawl throughout our room, attached to an IV pole. 

This guy is so resilient that I’m proud to be his mom. 

Let me get to the not so pleasant portion of my day. Had a visit from a young woman in palliative care. She wanted to introduce herself to me. As you all know part of our talk last week, prior to choosing for Mac to start another round was also option to keeping him comfortable at home (hospice)

So let’s go over some definitions 

 ✅ Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

   Vs

✅Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. 

✳️Both palliative care and hospice care provide comfort. But palliative care can begin at diagnosis, and at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

Now this was followed by a discussion with Dr. V about if something happens.

DNR: do not resuscitate 

DNI: do not intubate

Now mind you most adults make this decision at some point in their life. Well as a parent you can always adjust your decision based on situation.

Now most of you have come to understand that one of the biggest complications in treatment is infection. If you all remember Emerson had bacteremia (infection in blood stream) a few weeks ago. At the same time we found out the leukemia was back. The infection was bad enough right? Well an infection like that could lead to the following: Sepsis➡️severe sepsis➡️septic shock

Sepsis include: at least two of following

• a fever above 101ºF (38ºC) or a temperature below 96.8ºF (36ºC)
• heart rate higher than 90 beats per minute
• breathing rate higher than 20 breaths per minute
• probable or confirmed infection

Severe sepsis: occurs when there’s organ failure.

• patches of discolored skin
• decreased urination
• changes in mental ability
• low platelet (blood clotting cells) count
• problems breathing
• abnormal heart functions
• chills due to fall in body temperature
• unconsciousness
• extreme weakness

Septic shock include the symptoms of severe sepsis, plus a very low blood pressure.

Now that I have given you much detail. The concern would be that if something were to happen to Mac, in which resuscitation would be needed, and it was due to complication like a very bad infection. It was voiced that it’s not always best to do everything possible as child could suffer more. As you give medicines in attempt to keep child alive. 

Now often when these conversations are had I’m asked to ‘put my doctor hat on’.

My mind is turning. 

Of course this a conversation that even I as a doctor do not enjoy having this conversation.

Things just got real. 

I am grateful that as we have finished 2 days of chemo Emerson has done amazingly well. Though these conversations are hard, I know that your plan is bigger than man’s. 

Jesus, you are good and just and fully loving and merciful. I know that you don’t desire for children to suffer, but so many do every single day. I can only pray that you may guide our family to make the beat decision for Emerson, as we do not want any pain or suffering. Lord we trust you to bring Mac through thus lengthy chemo session. May the power of the Holy Spirit be poured out over him. In Jesus precious name, Amen