In the Hospital: what I know and what I could really use

The doctor just came in and gave us an update on what's going on with my sister. Here's the story so far.

She became nauseous on Tuedsday night, and started throwing up until she got to the point where she could not even keep liquids down. On Thursday she went to the doctor and they sent her to the hospital to get IV fluids. They gave her a bag of fluids and she felt better, but as soon as she got home she started to get nauseous again. Friday morning they decided to go back to the hospital and ended up in the ER. At that point she was put in an ambulance and brought and checked in to the intensive care unit here. Friday she was very out of it and her sodium level was not responding. I got here on Saturday afternoon and she was more aware, but still looked pretty sick. She was drowsy and sleeping off and on and still sort of out of it when the doctors asked her questions etc. I got to the hospital around 10:30 this morning, and she looks a lot better, but it still weak and definitely not 100%.

Her doctor is great. Here's what he said. A long time ago when we evolved from sea creatures, we evolved so that we have about the same salinity as salt water. So, we have to maintain that level, and our body does that by using hormones and having our kidneys pee out water. If we drink a glass of water, we generally pee out a glass of water as well. For whatever reason, my sister's body is peeing out salt and hanging on to water, which means that something in her brain is telling her body to hold on to water.

This is not a common situation. You see it in people who have a head injury, or sometimes in old ladies as a side effect of taking Paxil or diuretics. They're not sure why this is happening.

The doctor said that a normal sodium level is 135-145. When she checked in to the hospital on Friday, her level was at 111. The doctor told us that normally if you walked in to a room with a person who had a 111 level, they would be nearly comatose - totally out of it, possibly unconscious, and would be feeling worse than ever. Even now, with a sodium level of 118, he said that normally people would be feeling very nauseous and out of it. So, this indicates that the sodium has been dropping over time, probably gradually over several weeks. The fact that my sister feels this much better and is aware and talking and stuff at this level indicates that she probably has not been living with a normal sodium level for a while now.

Tests have been done. She's had an X-Ray of her chest and an ultrasound of her abdomen, both with normal results. She did see an endocrinologist several years ago and was told that she had a growth or tumor on her pituitary gland. The endocrinologist that she saw today is going to get an MRI of that to see if there's been any change or that could be affecting the situation, but the main doctor said that he does not think it's that likely they'll find anything that could be causing any of this to happen.

Because of the history of endocrine issues (hormonal issues & the pituitary thing), the doctor thinks that this might be something that would happen more than once in her life, that we'll have to have medical records and be aware of it so that we can be informed in the future if it happens or if doctors ask about it.

Since they don't want the sodium to go up more than 10 points in a 24 hour period because that can be very dangerous, and in fact they probably want it to go up more like 5-6 points a day to avoid any danger. If your sodium goes up really fast, you can get a condition where your bodies sodium is way higher than your brain and that you can get paralyzed, which is obviously really bad. It's really rare, so it's not a huge worry, but a reason that she's going to be here for a while.

He's going to be moving her from ICU to a normal room today, and they're not doing IV fluids, and they'll check her blood a little less often. The goal is to get her sodium to level out WITHOUT the medication, she's on the medication now but it's a temporary solution to the problem. He estimated she'll be in the hospital for 3-5 more days and then will have to get her blood checked by another doctor at least every week or a couple of times a week.

We're waiting. That's all we can do. We're curious, and we want answers, but we might not get them. I'm going home tonight because our bankruptcy appointment is tomorrow, then probably coming back here with my Mom tomorrow to stay with Kira some more.

It's a weird situation. Despite the fact that it doesn't seem that serious just looking at her, having sodium that low can be a very serious condition and can even cause seizures. Despite the fact that it's not life threatening right now, it's not fun to come into an ICU and see your awesome little sister hooked up to an IV and a bloodpressure and tons of other monitors looking sick. Frankly, it's scary. I've cried a little, prayed a little, and just tried to be with her a lot in the last couple of days. I don't really want to go home tonight, but it's necessary.

In addition to all of this, I am of course in the back of my mind also thinking about the medical bills that will result from this. I have no power to help with that except to do research on organizations that might be able to help with the costs once all is said and done, and to be supportive.

I know there are a lot of people out there who care, and who have good thoughts or prayers to offer. I'd ask that right now if you could pray for the doctors to find some sort of cause and figure out what's going on, we could really use it. Also, thanks to my wonderful hubby Justin for posting last night - he's been added as a writer here for a while, and I've just been waiting for him to join me. We're not going to have a joint blog, but he might show up here from time to time, and I'm happy about that!