In the Hospital...Again

We figured since she was admitted to the hospital a week before Thanksgiving, it only makes sense to admit her the week before Christmas, too.

Juuuust kidding. While that was definitely the main reason we brought her back to the hospital, there was also the minor problem of her inability to eat or drink enough, as well as her inability to pass stool.

After her last hospitalization a few weeks ago, she was sent home with the expectation that her digestive system would begin to work normal again, but that's not what happened.

She was sent home without the ability to eat (with the hope that she would begin after a few days), but that continued being a problem, even though they had just cleaned her out. She also continued being unable to pass stool on her own. She was losing energy, so we started switching her solid meals out for liquid meals, which she did a lot better with. Our hope was to help her to make it to the GI appointment, where they could figure out what was going on and fix it. But that was in January, and despite our best efforts to get them to move it up, we never were able to get them to move it up.

PHOTO: For those that have followed us for a while might remember when the kids were little, they would hug Emma when she was upset. They still do that. Our son (15) walked by and saw Emma was having a hard time, so he hugged her for a bit. Then he asked her how she was feeling and let her talk about it for a while. He sat next to her and watched TV with her for the next few hours. (Since she hasn't had energy to do anything else.)

She continued to grow weaker and more distressed. I brought her back to the doctors a couple times and called and emailed them multiple times with updates, telling them how concerned we were and how she was behaving. They ended up telling us it was time to take her back to the ER, so we did, and she was readmitted.

By that point, she was completely backed up again, her kidneys were mad, and everyone seemed on board with the fact that something was definitely going on. Hem/onc, GI, nephrology, nutrition, and psychiatry are all currently part of her care at this time. It's Wednesday, as I write this, and she was admitted on Saturday.

The first couple of days, they worked on clearing her out. They did an enema in the ER that had a lot of success (different than what they tried the previous hospital stay). Then they attempted 8 doses of miralax given in 32 oz of water and wanted her to drink it within 3 hours, two days in a row. She managed maybe 4-5 doses of miralax, within that time frame, per day, in reality. That did help. She seems pretty cleared out, as far as we can tell. But she still can't eat normal amounts. She seems to eat maybe 1/3 or 1/2 of what is normal for her. So, we're augmenting her meals with liquid nutrition as well. We just started that, and we're not sure yet that she will be able to do that. They'll add an NG tube if not.

They also did a swallow study yesterday. We're not sure on the full results of that, but we did get half of it back, and her ability to swallow is totally normal. This means the problem isn't in her throat. So, they'll likely be doing a stomach scope today or tomorrow.

They have her on constant fluids, along with several vitamin supplements, and a couple new medications. She has been losing weight, and they want her to stop losing and start gaining. We're not sure how long they're planning on keeping her, but it seems like they really want to understand what is going on before they send her home, which is a relief. Just sucks we might miss Christmas. We're not sure, though. Maybe they'll have her home in time.

They currently suspect that her stomach and intestines have delayed motility (so many of you thought this was the case), but we don't know yet for sure. Hopefully these tests will get answers to that. I keep hoping that given enough time, her stomach will jump start itself and things will go back to normal. Like, maybe she'll wake up today and everything will work normally again.

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