Roxanne in the hospital. Again.
Beware: this post has a lot of medical blah blah blah in it. If you hate that kind of thing, here's a synopsis: Roxanne is stable, but we don't know when she's coming home.
Here's the long version.
This is Roxanne's third trip to Fairfax Hospital. The first was October 10-15, when she was first diagnosed with epilepsy/infantile spasms. Then she was in November 17-20, with eating/swallowing problems.
Most recently, she was admitted Wednesday, November 29 and is still there today. As I mentioned in my previous post, she has problems with swallowing, reflux, and low appetite. She was just scraping by with her intake until she caught a cold last week, which made her totally uninterested in eating. Also, her breathing, which was already too fast (probably because she was still recovering from aspirating food), became labored.
She was immediately put on IV fluids and oxygen to help with the hydration and breathing. She also got another nasal-gastric tube (NG tube) to supplement the nutrition she should be getting, but won't take from a bottle. I have to admit, the first couple of days in the hospital were a relief, just seeing that she was able to breathe easier and that I didn't need to worry about her hydration every minute.
Originally we thought as her cold/virus went away, she would feel better, get off the oxygen, and take more food from her bottle. We were mentally ready for her to go home on Monday, but she had other plans. She started coughing and gagging throughout the day, her breathing was getting weird again, and she needed her oxygen to be turned back up to bring her oxygen saturation to an acceptable level.
At this point, the gastro intestinal (GI) doctor and the pulmonologist (lung doctor) got involved in her care. The hypothesis was that while she is probably not aspirating any of the small amount of food she was taking by mouth, she seemed to be aspirating her reflux. This is very bad. When we heard "possible irreparable damage to the lungs", Dan and I were ready to do whatever it took to improve the situation.
The temporary solution is a nasal-duodenum (ND) tube, which she got yesterday. It's the same tube that ran from her nose to her stomach, but it's now placed to empty past her stomach, into the upper part of her small intestine, the duodenum. The whole idea is to skip putting food into her stomach, which should eliminate the reflux problem, which should eliminate the aspiration/breathing problem. I'm amazed that she can digest food without the benefit of swallowing and processing it through her stomach, but evidently, the human body is full of redundant systems.
Now we're just waiting to see how she does on the ND tube. If she's able to tolerate the feedings with the ND tube without getting sick, and her breathing improves enough to take her off oxygen, then we can probably go home. We will have to continue to feed her through the ND tube, with perhaps some by mouth, depending on the situation.
The question that keeps me up at night is why is all this happening, particularly now that her seizures are under control? The short answer is that nobody really knows. It could be the seizures. It could be the underlying cause of the seizures, which we still don't know. It could be the medication that we use to control the seizures. It could be all three. I feel like a total chump just reacting to all the problems that are springing up like weeds. I don't know what will happen next, and I'm running out of energy to deal with it all.
Dan and I are doing our best to keep ourselves together through the stress. Many, many thanks to MZ, JZ, MC, GP, YO, and other friends that have visited, kept us company, and brought us food. We couldn't do it without you. Special thanks to JL, my dear friend who has spent so much time at the hospital to allow Dan and I to get a few more hours of sleep.
Here's the best part: my mom is flying out this Saturday to help. I feel like the calvary is riding into town. I was doing fairly well on about 5 hours of sleep per night, but as I need to work with more and more doctors and make more intense decisions, I'm stretched way too thin. Dan's company is going through some major changes, so taking time off right now would be a major career gaffe. My mom, who just happens to be a pediatric nurse, will help take care of all of us.
I'll end on a happy note. Throughout all of this, Roxanne is continuing to smile at me, my friends, and all her nurses and doctors. She kicks and squeals with delight when we make faces at her. She's a generally happy kid, especially now that she's feeling better. I've tried to get another photo of her smile, but when I point the camera at her, she gets serious and looks at the camera with curiosity. But trust me, her smile makes my day.
Here's the long version.
This is Roxanne's third trip to Fairfax Hospital. The first was October 10-15, when she was first diagnosed with epilepsy/infantile spasms. Then she was in November 17-20, with eating/swallowing problems.
Most recently, she was admitted Wednesday, November 29 and is still there today. As I mentioned in my previous post, she has problems with swallowing, reflux, and low appetite. She was just scraping by with her intake until she caught a cold last week, which made her totally uninterested in eating. Also, her breathing, which was already too fast (probably because she was still recovering from aspirating food), became labored.
She was immediately put on IV fluids and oxygen to help with the hydration and breathing. She also got another nasal-gastric tube (NG tube) to supplement the nutrition she should be getting, but won't take from a bottle. I have to admit, the first couple of days in the hospital were a relief, just seeing that she was able to breathe easier and that I didn't need to worry about her hydration every minute.
Originally we thought as her cold/virus went away, she would feel better, get off the oxygen, and take more food from her bottle. We were mentally ready for her to go home on Monday, but she had other plans. She started coughing and gagging throughout the day, her breathing was getting weird again, and she needed her oxygen to be turned back up to bring her oxygen saturation to an acceptable level.
At this point, the gastro intestinal (GI) doctor and the pulmonologist (lung doctor) got involved in her care. The hypothesis was that while she is probably not aspirating any of the small amount of food she was taking by mouth, she seemed to be aspirating her reflux. This is very bad. When we heard "possible irreparable damage to the lungs", Dan and I were ready to do whatever it took to improve the situation.
The temporary solution is a nasal-duodenum (ND) tube, which she got yesterday. It's the same tube that ran from her nose to her stomach, but it's now placed to empty past her stomach, into the upper part of her small intestine, the duodenum. The whole idea is to skip putting food into her stomach, which should eliminate the reflux problem, which should eliminate the aspiration/breathing problem. I'm amazed that she can digest food without the benefit of swallowing and processing it through her stomach, but evidently, the human body is full of redundant systems.
Now we're just waiting to see how she does on the ND tube. If she's able to tolerate the feedings with the ND tube without getting sick, and her breathing improves enough to take her off oxygen, then we can probably go home. We will have to continue to feed her through the ND tube, with perhaps some by mouth, depending on the situation.
The question that keeps me up at night is why is all this happening, particularly now that her seizures are under control? The short answer is that nobody really knows. It could be the seizures. It could be the underlying cause of the seizures, which we still don't know. It could be the medication that we use to control the seizures. It could be all three. I feel like a total chump just reacting to all the problems that are springing up like weeds. I don't know what will happen next, and I'm running out of energy to deal with it all.
Dan and I are doing our best to keep ourselves together through the stress. Many, many thanks to MZ, JZ, MC, GP, YO, and other friends that have visited, kept us company, and brought us food. We couldn't do it without you. Special thanks to JL, my dear friend who has spent so much time at the hospital to allow Dan and I to get a few more hours of sleep.
Here's the best part: my mom is flying out this Saturday to help. I feel like the calvary is riding into town. I was doing fairly well on about 5 hours of sleep per night, but as I need to work with more and more doctors and make more intense decisions, I'm stretched way too thin. Dan's company is going through some major changes, so taking time off right now would be a major career gaffe. My mom, who just happens to be a pediatric nurse, will help take care of all of us.
I'll end on a happy note. Throughout all of this, Roxanne is continuing to smile at me, my friends, and all her nurses and doctors. She kicks and squeals with delight when we make faces at her. She's a generally happy kid, especially now that she's feeling better. I've tried to get another photo of her smile, but when I point the camera at her, she gets serious and looks at the camera with curiosity. But trust me, her smile makes my day.
posted by Talentedhands at
7:41 PM
1 Comments:
Yay mom! Yay smile! Yeah, dude, stomachs are basically pointless. Ok, they mush up your food and start digestion of proteins, but I think that's really about it. If I remember correctly from when I TA'd intro bio in grad school. :)
Also, just last week I saw a press release or something about a family with a gene for stomach cancer, and several of them had their stomachs removed. (Removed, I tell you!) And they were like, well, you know, now we just chew more.
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towwas, at 11:48 PM
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