Dehydration: A Delicate Balance

[Earth Mother 2 Angels]

((((((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,

Rose

[andromeda31]

Hi Rose!

Glad to hear Jon is improving! It is so hard to know how much fluids to give. Caitlin doesn't drink a lot and we always offered her milk (to help the bones) but with all the seizure meds she takes, they want her to drink more water....and she has been....although now, she doesn't want to really drink milk anymore. I try to give her a choice, milk or water, but I think I might just start giving her milk at supper without offering a choice. But I hate to deprive her of needed fluids if she would rather have water (and then thus drink more of it if it is what she really wants). Hope things continue to go well for you all!

Lisa O.

[Donna Thomson]

Wow, I am so pleased that you figured out the dehydration! For us, constipation was our 'dehydration' in your story. Nick would have diarrhea because we were pumping him so full of stool softeners, but he would become so ill and so distressed and we would X-ray his gut only to find out that there was old, hard stool very high up in his gut causing all the trouble. Sometimes it is so difficult to tell....but every single victory or defeat in our efforts to diagnose gives us more information. Bless Jon, you and Jim in your daily battle to keep your treasured son alive and comfortable. I hope you have a comfortable day today, free of any worries or emergencies!

[mg12061]

So glad you got it figured out... It's all a "balancing act" isn't it? We have to be very careful of making sure Kathleen does not dehydrate ever since her diagnosis of Moyamoya. And of course now with her constipation problems, which we know can't be from lack of fluid since we've been so careful with that. From what I understand our body tends to "hold onto" more fluid if we're not getting enough. This could be why he seemed bloated yet he was dehydrated. All he drank was stored in response to not getting exactly what his body needed.
Mary Grace

[Earth Mother 2 Angels]

((((((Lisa))))))

There might be other ways to give Caitlin calcium, so you don't have to worry about milk vs. water. Try cheese, especially cottage cheese, or other food sources, as discussed here: http://whfoods.org/genpage.php?tname=nutrient&dbid=45

And don't forget the importance of Vitamin D in bone health. Does Caitlin receive a vitamin supplement? You might want to check that for calcium, magnesium, and Vitamin D.

Water flushes the liver and kidneys and maintains bladder and bowel functions. I vote for water over milk. Or any other liquid, actually.

((((((Donna))))))

Poor Nicholas! My boys had the same problem. I hope that issue is behind (no pun intended!) him now.

We find it incredibly frustrating to be figuring out Jon's daily mysteries, with whatever observations our medical professionals can provide. And, we have to go day by day, because each day, Jon changes a little. It's the same, but different.

The doctor finally shared the numbers with me today, after I asked twice, on Jon's levels. He kept saying, "Dilantin still too high, Depakote up a little." NUMBERS, Doc! I need NUMBERS!

We have successfully brought down Jon's Dilantin level from 29.9 on 4/14 to 19.5 last Friday. YAY! But his Depakote is up again, so that's not good, and may explain why he's sleeping so much today.

Now that he is peeing more, we have to factor that into the equation also.

When he awoke after 11 hours of sleep, his SATS were dangerously low at 75. So Jim and I went into "ICU Mode," and with suctioning, a breathing treatment, and movement, Jon's SATS came up to 97. Even with those low SATS, his respirations were normal, and he was smiling and seemingly fine, so I am not concerned at this point about pneumonia. (Emphasis on "at this point.")

While Jon has improved somewhat, he's still not back to his normal. I don't know whether this will resolve, when we finally get his seizure meds in the right range, or if this is Jon's future. But I'm praying with all of my might that this is a med issue, and that we will get it resolved, and that he will return to his normal.

((((((Mary Grace))))))

Thank you for the explanation of dehydration with fluid retention. I think you are exactly right with your analysis.

How is Kathleen? Would love an update.

Thank you all for your good thoughts and positive energy for Jon and us. And please know that they are returned to you.

Love & Light,

Rose

[mg12061]

Rose I hope you get everything under control. I don't think I would worry about peeing more, that's a good thing it means he's getting lots of fluid and it's doing it's job and leaving the body. He's not retaining it. A worry would be if he's peeing less I think.
Kathleen is doing OK... She's getting backed up and has random belly pain and a LOT of bloating lately. Right now I"m just trying to keep he healthy until we get to BCH on Monday next week. From what I've heard the Dr. she's seeing is wonderful so I'm very hopeful that he'll get to the bottom of all of this. She's felt so bad fo so long (as I look back , longer than I originally thought) I'm really hoping that she will have a healthy and ahppy summer.
Mary Grace

[Earth Mother 2 Angels]

((((((Mary Grace & Kathleen))))))

I pray that you have a healthy, happy summer too, and that the BCH doctor will diagnose Kathleen and provide her with the best protocol to treat her issues. I'm so sorry to hear that she's been bloated and in pain. I can relate to that so well, as this happens to Jon occasionally. If you are like me, you just feel so helpless sometimes, it breaks your heart.

Please update us when you return from BCH.

My concern about Jon peeing too much relates to his seizure med levels. We have lowered his doses significantly, so once his urine output increases, so does his excretion of his seizure meds. Our concern is that his seizure med levels would drop, possibly triggering a seizure.

Last night, after we turned and repositioned Jon, his urine output slowed way way down. Too too much. He had peed an excellent volume all day, so we knew that he had depleted a lot of his urine. We rearranged his catheter, because that can sometimes cause a reduction in output (if the catheter is hitting the bladder wall). We irrigated his catheter, in case he had some debris clogging the hole.

After a few hours, we decided to increase his water intake. Again, his urine was darker, and his flow was much slower, so we recognized that as possible dehydration. As he peed so much initially yesterday, we had to replenish that faster than we had to get him back to normal.

It dawned on me that we had continued with the same amounts of water, which initiated his flow, but we didn't increase it, as his output increased. So, he became dehydrated again.

Finally, after 10 hours, his urine output has improved.

This is what I mean by a "delicate balance." We have to be able to discern how much water volume he can tolerate to keep him hydrated but not flood him out.

Eventually, I pray that we get this right!

Love & Light,

Rose

[mg12061]

Wow I get what you mean by a delicate balance... Sounds like your right on top of it all.
Mary Grace

[Earth Mother 2 Angels]

((((((Mary Grace))))))

We are desperately trying to stay on top of it, and to figure out any other symptoms.

His heart rate dropped yesterday/today to about 58/59. His typical heart rate is 65-70. He is quite fatigued. This could be from any number of issues, such as: seizure meds still too high; no BM for over a week; dehydration (although I do feel he's hydrated now); hypothyroid; poor circulation.

The good news is that his SATS are staying in the mid-90's. And he's peeing a good volume of light yellow pee.

Every day a new adventure!

Love & Light,

Rose

[mg12061]

What a lot to keep track of. I know Kathleen's GI issus have added a lot of health issues and to a very poor quality of life for the past eyar or more. It exhaustes her. The diagnosis of Crohns and celiac have helped but the constipation issue really leaves her feeling awful so I know it's affecting more than what I can outwardly see not ridding your body of the waste is so bad for your overall health. She's such a trooper and tries to push through it and go to school. She is at a high risk for strokes if she gets dehydrated so the diarhea from the constipation always worries me. As you said it's a daily "adventure" we never what the day will bring... It sounds like your doing everything you can to get this under control so hopefully you give yourself a pat on the back once in a while. Praying that your persistnace will pay off and you can get things under control.
Mary Grace