((((((HUGS)))))) To Everyone ~
Jon's journey continues to teach us about various medical issues, symptoms, and treatment. The latest revelation pertains to dehydration.
Jon is battling severe edema (fluid retention) in his legs/feet and torso. His belly is sloshy. We know from Jon's hospitalization last year that with 50 lbs of fluid in his tissues, maintaining his electrolytes and kidney function with fluid was a "delicate balance," as Jon's doc repeatedly characterized the situation.
We adjust Jon's fluid intake based upon his symptoms. If his belly is distended, we reduce his fluid intake to avoid vomiting. We give him smaller amounts of water more frequently to lessen his volume.
Of course, we are just guessing, like throwing darts in a pitch black room.
As his urine output began to diminish, although he was still filled with fluid, his urine became darker in color. That can be a sign of concentration, infection, or dehydration. We chose dehydration, and with a leap of faith, we introduced more water to Jon's regimen. We rescheduled his formula intake to include an extra water flush. For 24 hours a day, Jon receives fluids every 45 minutes via his Gtube. We withhold formula, if Jon has significant residuals, meaning 1/2 of the amount we had given previously.
Although Jon is still toxic on Dilantin, dehydration is a contributing factor to fatigue. It also lowers the sodium level in the body, which is a chronic problem for Jon, and his sodium has been terribly low for weeks now.
Additionally, the bowels need fluid to move, so constipation is a side effect of dehydration, which Jon has.
Jon's body temperature has been below normal for some time now. Jon's home health nurse told us on Friday, when she visited to draw Jon's blood, that this is also a symptom of dehydration.
On Thursday, Jon was very ill, and I was fearful. I emailed Jon's doctor, and I asked him directly to look at Jon's recent blood work and tell me whether Jon is in renal failure. He emailed me in response that Jon's blood work does not indicate renal failure. His doc attributes Jon's symptoms to toxic Dilantin.
But as I spoke Thursday night to Jon's nurse, scheduling her visit, I told her that Jim and I had discerned that Jon was dehydrated, and we had increased Jon's water, which he was tolerating.
By Friday afternoon, Jon was peeing like a race horse, beautiful light yellow pee. His temperature was normal. His color was good. He was alert. His SATS were improved, and he required less suctioning.
We have continued with the new protocol, and Jon's urine output remains outstanding. He slept for 8 hours straight for the first time in weeks, and he awoke with excellent SATS. By afternoon, he was tired, and his SATS began dropping.
I give thanks every minute of the day for Jon's trache. I just unscrew the plug, and he coughs out his gunk. If needed, I suction him a little. SATS always come up. We'd have been in ICU many times over the past year, if Jon didn't have his trache.
All of these weeks of micromanaging Jon's fluids, and we were wrong! He was dehydrated and needed more. It's just so difficult to comprehend that, when you are looking at his giant feet and swollen belly.
Perhaps his dehydration is even linked to his Dilantin and Depakote levels changing, and to his ceiling staring, which he isn't doing any longer, thankfully.
We have a new attitude about fluid now.
We give thanks for Jon's improvement, while we recognize that it remains a delicate balancing act. And even with all of their knowledge, experience, and science, Jon's doctors admitted to us last year that they were playing the hand that was dealt to them every day. I think that they were surprised and delighted that Jon survived, and likely, if they think of Jon occasionally, feel the same way that he hasn't returned in well over a year. I'm sure that they've been expecting him.
Our plan is to keep him home, where he belongs. And now we have one more piece of knowledge to help us to do that.
Love & Light,