I want my baby home

[gwywnnydd]

We had to go back to the hospital Monday morning. I haven't been home since. Just stopped in at work for a few hours to avoid another day off. Going back to the hospital later. They're muttering about letting him go home today.
I want a shower.
I want to go home.
I want my bug to go home with me.

Comments

[burgunder.livejournal.com]

Swedish rules. Hope he's back in your arms and well soon.

[ginkgo.livejournal.com]

We'll be thinking of you guys. I hope the little one comes home healthy and hydrated soon and that you will be able to rest.

[artemis0827.livejournal.com]

I'm sorry. You mentioned something a while back...started with an 'N'. I hadn't heard he had any problems until then. What is it that he has?

[gwywnnydd.livejournal.com]

He has Nephrogenic Diabetes Insipidus. Teh short version, his kidneys don't conserve water, so he's really sensitive to dehydration. During developmental stages, this can have serious permanent effects.

for more info:
http://www.ndif.org/

[artemis0827.livejournal.com]

Oh man! I'm sure you'll keep a close eye on him while he's growing. But is it something he can grow out of, like juvenile asthma, or will he always have kidney problems?

[gwywnnydd.livejournal.com]

he'll always have this problem. It's genetic. Managing the condition will get easier as A) his total body volume increases; and B) he passes all his developmental milestones.
For me and my brother, now it's pretty simple. The only time I have to go into *why* I do certain things the way I do is when some (well meaning, I'm sure, but intrusive) individual says "Well, if you didn't drink so much water, you wouldn't be peeing all the time!". *BZZZTT* Thank you for playing. The correct answer was actually "If you didn't drink so much water, you'd be in the hospital!".

[artemis0827.livejournal.com]

I did some reading on it this afternoon. It looks like it is totally manageable...as long as you pay attention. I'm sure that's hard as a kid. Connor is lucky that his mom and his uncle have both been through it and can help him through the tough times. :-)

Oh, and personally, I'd rather continue to drink my gallon of water per day and make sure I'm hydrated than reduce the number of times I go pee during the day.

Thanks for sharing this with us. I see that NDI is rare, but I think our world is seeing more and more of the hormonal and autoimmune problems because of our environment. The more we share them with each other, the better educated we become.

Becoming less rare

[gwywnnydd.livejournal.com]

NDI is becoming somewhat better known, mostly because medical science has advanced enough for patients to survive their first year.
My brother and I are at the tail end of the first generation of NDI patients to live to adulthood. Before us, the babies just never really did very well (read: no weight gain, steady decline in health), and usually died (Failure to thrive) before a year had passed. The astronomically rare few who survived did so with severe retardation (the brain really doesn't like not having enough water while developing).
It's been around for at least a century and a half.

Re: Becoming less rare

[artemis0827.livejournal.com]

Wow! That's amazing, but I can see how babies would die easily from it if the parents didn't know what was wrong. I can imagine previous generations couldn't probably figure out what was wrong until it was too late. Only those who lived near the most up to date hospitals probably got the proper diagnosis.

Re: Becoming less rare

[gwywnnydd.livejournal.com]

I didn't get the proper diagnosis until I was 18 months, and I lived less than a mile from the premier research hospital in the region.
It took a Nova episode on KCTS for my mom to get an inkling of what might be wrong :).

There's a family up on Orcas Island, that have two boys with NDI, and they're doing a FABULOUS job of encouraging medical schools to cover conditions like this, at least a little bit. Doctors just didn't hear about problems like this in school, so of course they couldn't be expected to recognize the symptoms.

[lawst.livejournal.com]

Give me a call if you need to vent.

[gabri.livejournal.com]

I have all day off tomorrow, so if you happen to pop by again and see this message, let me know if you need anything done while you're busy.

I'll be gone Saturday, but just give a shout if you need something brought to you during the day next week. Hopefully, the family will be at home, with well hydrated an happier little one.

He came home last night

[gwywnnydd.livejournal.com]

I'm finding it difficult to concentrate at work, but he seems to be just fine :).

[petit-souris.livejournal.com]

Lots of love from KC have been thinking of you daily.
Hang in there honey.
LOves!
P_S