Well, it's been going on a month or so now. The screaming, the cold sweats, the retching, the blood pouring from her tube. And a new symptom....*horrendous* breath. We take very good care of Charlie's teeth so this one threw me for a loop, until my mom reminded me that bad breath can come from the gut too. Then it all fell into place.
We have an appointment with a new GI next month. Maybe that will help. I researched doctors at the hospital a bit and found out we already saw the two most respected GI docs that specialize in motility. The main guy was the one that was the MOST unhelpful. Wonderful, huh? In my experience though, sometimes the docs with the least experience are the ones that can help the most. Because they aren't arrogant and are willing to think outside the box. So maybe this other doc, who doesn't specialize in motility, will have some ideas and be willing to work with us.
So we've had an eventful week. I started a new job (yay!). It's part-time, about 20 hours a week. I have to drive a ways, but the hours are good (mornings) and the pay is decent. And the job is very easy. I basically warm up food and serve it to little kids. It's a small kitchen, so I work alone, which is best for me. It irritates me when people get in my way. LOL We've had minimal nursing because our regular day-time nurse went on vacation. We knew well in advance she was leaving and I *thought* I had it all covered, until the agency told me they weren't going to let the other nurse work all the hours. And they can't be bothered to send out another nurse. Yeah, I'm dumping them as soon as I can. Long story short, they want our nurse for this OTHER case, their "big" case, I guess you could call it. The family has 11 adopted kids (most of them disabled) and many of them have nursing. If they lose that case, someone is getting fired, I'm sure, so they send all the nurses there first and leave the rest of us hanging. It's not like we have to WORK or anything! Grrr.... They didn't say it in so many words but the person I talked to got very defensive, which leads me to believe she knew what they were doing was wrong. Thankfully our nurse is great. She knows what it is like to be a single mom, so she said we'd work it out one way or another. Basically, she got there as late as possible so I could go to work and left ASAP when I got back. She worked like 30 hours. I'm not sure what she's getting paid for yet (maybe 24) but I owe her big time for bailing me out. Our day-time nurse will be back on wednesday so next week won't be so hectic.
On tuesday I asked my mom to watch Charlie so I could go clothes shopping for my new job and she accidentally yanked out her tube while I was gone. I walked her through putting in a replacement over the phone, which she handled beautifully. Then the next day we took her to Children's to get a new one in. I had to haul ass to get out of work early to get her there before the doctor who does the tubes left. But we made it. Unfortunately, he had to mess around a little more than normal to get it in just the right place, so her belly was hurting pretty badly. She didn't even handle Pedialyte at first. Then we got her handling that and she screamed when we tried diluted formula that night and the next day. We still have her on just Pedialyte today (saturday) but I'm going to try her on diluted formula this morning and see how that goes.
The doctor who did her tube was the same one who did her salivary gland ablation so I was able to talk to him about that. He's pleased with the results (just her peeing is reason to celebrate but he was thrilled to see her off the oxygen as well), but he's willing to do them again, one at a time, until we get the results we want. So we'll be trying again, and hopefully it won't be so bad, since he'll do just one at a time, not 5 like last time.
So I got brave and bought some yogurt to put in Charlie's tube. I never tried it before because she can't tolerate much of anything in her stomach. I thought dairy especially would be hard for her to digest. Plus, I thought I'd have to put a decent amount in there to get the effect of the probiotics in it. Well, I was wrong. I put just 5 mls of yogurt in her tube and not 2 hours later her breath was almost normal. It was RANK before. Very, very bad. So that's good. We're giving her 5 mls twice a day. We just have to leave her tube clamped for a couple of hours because it takes her so long just to get 5 mls through. But at least she's not barfing it. I'm surprised such a small amount can have such a huge effect on her. I wish I'd known sooner that such a small amount could help her. I don't know if it will help with any of her other GI problems, but I'm glad we solved the bad breath.
Pictures!
We have an appointment with a new GI next month. Maybe that will help. I researched doctors at the hospital a bit and found out we already saw the two most respected GI docs that specialize in motility. The main guy was the one that was the MOST unhelpful. Wonderful, huh? In my experience though, sometimes the docs with the least experience are the ones that can help the most. Because they aren't arrogant and are willing to think outside the box. So maybe this other doc, who doesn't specialize in motility, will have some ideas and be willing to work with us.
So we've had an eventful week. I started a new job (yay!). It's part-time, about 20 hours a week. I have to drive a ways, but the hours are good (mornings) and the pay is decent. And the job is very easy. I basically warm up food and serve it to little kids. It's a small kitchen, so I work alone, which is best for me. It irritates me when people get in my way. LOL We've had minimal nursing because our regular day-time nurse went on vacation. We knew well in advance she was leaving and I *thought* I had it all covered, until the agency told me they weren't going to let the other nurse work all the hours. And they can't be bothered to send out another nurse. Yeah, I'm dumping them as soon as I can. Long story short, they want our nurse for this OTHER case, their "big" case, I guess you could call it. The family has 11 adopted kids (most of them disabled) and many of them have nursing. If they lose that case, someone is getting fired, I'm sure, so they send all the nurses there first and leave the rest of us hanging. It's not like we have to WORK or anything! Grrr.... They didn't say it in so many words but the person I talked to got very defensive, which leads me to believe she knew what they were doing was wrong. Thankfully our nurse is great. She knows what it is like to be a single mom, so she said we'd work it out one way or another. Basically, she got there as late as possible so I could go to work and left ASAP when I got back. She worked like 30 hours. I'm not sure what she's getting paid for yet (maybe 24) but I owe her big time for bailing me out. Our day-time nurse will be back on wednesday so next week won't be so hectic.
On tuesday I asked my mom to watch Charlie so I could go clothes shopping for my new job and she accidentally yanked out her tube while I was gone. I walked her through putting in a replacement over the phone, which she handled beautifully. Then the next day we took her to Children's to get a new one in. I had to haul ass to get out of work early to get her there before the doctor who does the tubes left. But we made it. Unfortunately, he had to mess around a little more than normal to get it in just the right place, so her belly was hurting pretty badly. She didn't even handle Pedialyte at first. Then we got her handling that and she screamed when we tried diluted formula that night and the next day. We still have her on just Pedialyte today (saturday) but I'm going to try her on diluted formula this morning and see how that goes.
The doctor who did her tube was the same one who did her salivary gland ablation so I was able to talk to him about that. He's pleased with the results (just her peeing is reason to celebrate but he was thrilled to see her off the oxygen as well), but he's willing to do them again, one at a time, until we get the results we want. So we'll be trying again, and hopefully it won't be so bad, since he'll do just one at a time, not 5 like last time.
So I got brave and bought some yogurt to put in Charlie's tube. I never tried it before because she can't tolerate much of anything in her stomach. I thought dairy especially would be hard for her to digest. Plus, I thought I'd have to put a decent amount in there to get the effect of the probiotics in it. Well, I was wrong. I put just 5 mls of yogurt in her tube and not 2 hours later her breath was almost normal. It was RANK before. Very, very bad. So that's good. We're giving her 5 mls twice a day. We just have to leave her tube clamped for a couple of hours because it takes her so long just to get 5 mls through. But at least she's not barfing it. I'm surprised such a small amount can have such a huge effect on her. I wish I'd known sooner that such a small amount could help her. I don't know if it will help with any of her other GI problems, but I'm glad we solved the bad breath.
Pictures!
Showing off her mad kicking skillz.
And lifting her head just a little to see Grandma's Ipod.
1 comment:
Yogurt is amazing. I found this pourable yogurt while visiting in IN - from grassfed cows, very fancy stuff. We've been putting in Joe's milk drinks, and he his constipation has not been as big an issue. We had to dial back the Miralax. I haven't seen this result from feeding him yo baby, but this stuff is amazing. I'm planning to try making my own with our goat milk. Bad breath has been an issue with Joe as well - he has delayed gastric emptying.
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