I’ll be damned.....

We had a normal night....turn into an awful morning....turn into a great afternoon! Around 6am everything went haywire (as it does almost daily) , and didn’t even out until about 1pm. High fever/high BP/high HR. Some light delirium and very little recollection of the lost hours. These episodes can be from any number of triggers, but they basically ensure we miss two meals of the day which makes calorie sustainability impossible. Not to mention the sheer exhaustion they cause. Today, somewhere deep down, C knew compliance was key. We got down 545 calories and 21 grams of protein during the despondent morning, and a protein bar and fruit bowl at first sign of “lucidity”. We are at 935 calories and 37 grams of protein and we haven’t even decided on dinner. 👊🏼 This is more than he has had in a week or two. He had a great PT session with 3 well executed laps, he is “satting at” (this is very slang medical jargon for oxygen saturation levels) 97-100 at the lowest level of oxygen he has been on in weeks (4 liters), he is on the phone working and without any sluggish speech, and he just said he “feels good”. Y’all know this one - always giving such colorful description. Such insight into how he’s feeling. 🤦🏼‍♀️ We have a stronger pre-med plan tomorrow with blood products to see if we can keep this ongoing problem from happening again. 🤞🏼🤞🏼 The fact that we’ve seen such marked improvement in the breathing over the last two weeks, eases some of our tensions. Listen, there are a million meds at play that can mask fever, lower BP, disguise every symptom he has. But, the meds don’t give the mental push to drink a plant based crappy protein shake mixed with fake calorie filler when you’re spiking a fever, shaking with chills, packed with ice and only a sheet, and disoriented with high BP/HR. That’s just an inherent will to get it done!! Meds might give you the energy boost to go for a walk, but they don’t carry your now unrecognizable bony legs to push one foot in front of the other and insist on an extra lap than is necessary. That’s just mental stamina. Meds don’t make you pick up the incentive spirometer every couple of hours and breathe into it when you can barely make a whistle to help strengthen your lungs. That’s a conscious choice to do your part. So we are going to take advantage of the edge the meds give, bleed them for all they are worth, and try to get ahead in this race.

Reiki energy healing, relaxation, Lent - the reflection and preparation of Easter and rebirth, or likely meds out the wazoo 😬.....whatever gave us such a significant turnaround today, we will take it. We aren’t naive - but each time those clouds part we are going to bask in the sun. 🌤.

Hope this finds you all well,

C & A

This is the super enthusiastic smile he was willing to add to this update post! 😜