Water water water-witch

sun-less lounge room camping

My faithful friends. Thank you. The answer to my momentary lapse of courage was not “rejection” but “water”. Lots of water, in fact. After I wrote the last blog, I went and spread my concerns all out before God, and suddenly, as he often does when I bother to ask, he made the water influence on creatinine crystal clear. Honestly, I love my Lord for how he does that.

Over the weekend before that increased creatinine of 45, Jesse had played outside all day for both days. A wonderful gift of summer. However, on a normal day, Jesse needs to drink at least 2.4L of fluids. That’s a normal day …. i.e. a day when you are not sweating.

I seriously don’t know how healthy people do it. I mean, to be “healthy, you are supposed to drink an optimal 8-10 glasses of water a day. That’s only around 2L. I can’t even do that and I am a grown up (apparently). In the heat, you have to double it. The life of Jesse’s kidney now depends on it. Except he’s four. On Monday, Jesse’s creatinine was high because of that 2.3-2.4L he may have drunk, after you take out “the sweats of summer”, his mankid may only have registered 1.4L of water. And that’s not enough. Hence the birth of the water-witch.

On Wednesday, thanks to the witch, his creatinine was back to 37.

Yesterday we hit an all-time high of 3.1L fluid intake. It was not without its stress. We were at a golf course being the “living posters” for the Children’s Health Foundation annual golf fundraiser. Jesse was featured on the golf invitation, program etc etc. So they asked us if he would come and hit off the first golf ball; be there for a couple of cocktail receptions and a dinner at the end. After what they did for Jesse, we are happy to help the hospital raise money any way we can. However, yesterday it was roughly 45oC if you add in the humidity. Within 10 minutes of being outside, Jesse was streaming with sweat, his face was bright red, and I could see him visibly wilting. I started to get anxious. I am not easily anxious. But I was looking at each drop of sweat and thinking “that’s another 100ml I have to put back in….that’s 200ml….. 400ml ….. arrgghhh! Inside! Inside! We have to get inside!”

It was another realization of the new reality: we can’t spend a lot of time outside in summer. Or if we are outside, Jesse can’t be hot enough to sweat too much. What comes out has to go back in, and I died trying to get it all back in yesterday. We just cannot risk the damage to his kidney.

drink bottles for every outfit

I am getting sneakier by the day to manage. Thanks to a dear friend in Switzerand (thank you Marianne!) and a dear friend in St Thomas (lovely Kimmy), we now have a fabulous collection of drink containers, all with their own kitschy appeal – skunk bottles, zippy straw bottles, green G.I Joe ones, really really long and skinny metal bottles, bottles with a loop so you can pop it on your belt, blue bottles, red ones and brown ones. We are also using juice boxes, “tang”, freezies, flavoured milk, slushies and fruit shakes as fluid-bribery. It’s kind of exhausting. It’s like trying to think up new games to amuse your four year old. Only  his survival depends on it.

I now have to come up with a cunning plan for how we can go camping without sacrificing our water/non-sweat needs next week. We just bought a tent, and Indie and Jesse are currently playing inside it in the lounge room (because it’s wilting hot outside). They are desperately excited to go ‘real camping’. As the Mum, I am going to both make it happen, and protect that bloomin’ kidney at the same time. How though? That’s the question!

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10 thoughts on “Water water water-witch

  1. Jason just bought one of those camel backpacks that hold water. The rubber nozzle is super fun to chew on and he’d be wearing his water supply! What do you think?

  2. What if you try “real Camping” in your back yard. Tell Jesse that the tent is for sleeping in at night – like you would if you were really camping. That way you can control the fluids in the heat during the day.

  3. IF YOU GO “REAL” CAMPING – HOW ABOUT HAVING A GENERATOR SO YOU CAN PLUG IN A FAN TO COOL JESSE AND EVEN PLUG IN A SMALL PORTABLE PRIDGE TO KEEP POPSICLES ETC IN. EVEN AN OVERNIGHTER WOULD MAKE BOTH HE AND INDIE SO HAPPY IM SURE. HOPE IT WORKS OUT AND AM SO GLAD THINGS ARE GOING WELL.

  4. Kim…How fortunate the Lord give us ideas such as how to get more fluid into Jess. Keep up the good work! It is supposed to be a little cooler next week. Let’s hope and pray.
    Blessings,
    Katherine

  5. Hi Kim,

    The sweating/perspiration is called “insensible losses” in medical terminology. As former ICU nurse I remember trying to calculate this “output”… so hard to constantly balance.

    Your love of writing shines thru’ and we feel your pain. You are truly selfless. God bless you and your family.

  6. Good to hear how God revealed Jesse’s need for water to you Kim. Glad to hear of Jesse’s favorable response! (Try to eliminate salty foods as this also increases the need for increased fluid intake.) Dave & Yvonne

  7. So enjoyed meeting you and Indie, Jesse and Molly today. You’re an “awfully” nice water witch 🙂 Will pray that Jesse continues to drink well and that your creative drinking ideas will surround this whole task with many light moments and good laughs as you all “guzzle” together!
    Love and prayers, Wendy

  8. I so get the need and appreciation of the variety of drink bottles. Zaidyn (my son) grew up with anaphylaxia (severe food allergies) and when he was younger there was very little ‘shop brought packaged’ food he could have. Most things had to be homemade and were boring. Anyway, our key was the containers we put the boring food in. All sorts of coloured and interesting containers, and drink bottles. It sure makes a difference if the boring thing comes in a different container or way. Could you develop some sort of reward chart as well? Is that a possibility? It sure is hard, I told Zaidyn (who is 10) how much he had to drink on an ordinary day (and more on a hot/sweaty day) and he thought it was pretty tough as well. Maybe we’ll have a think-of-Jesse day here and drink as much as he has to. I’d sure find it hard, I don’t drink anywhere near enough. Zaidyn said “me neither” then – he added “his pees would sure be coming out white”. He has learned about the more you drink the whiter (clearer) the wee. I told him this may not be the case with Jesse and his kidneys…I have no idea.
    Well now that you have had information about Zaidyns knowledge on the wee process, we might end here (hes reading over my shoulder and laughing)
    Thinking of you all
    Teddy & Zaidyn

  9. …do you give him straws a lot. A few years ago I was having to drink a horrendous infant formula because of weight loss due to colitus. Drinking it through a straw made it easier and quicker to consume! And do you have a machine to make slushy things, we’ve got one, you freeze the ice then put it in the top and it shaves the ice, you can make cordial ice/juice etc for it. And how about a milk shake maker? Milk has so many nutrients, can he have a smaller lunch and a large milk drink as milk is a food anyway, I’m sure you know all this stuff and I’m probably being entirely unhelpful, just thinking out loud. Maybe out of all my dumb comments, one might be helpful! I’ve been thinking about him and you all afternoon!!! I think we might keep our eye out for interesting drink bottles to send you to!

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