First two tests completed
We spent over 6 hours at the children's hospital today. The kids did great; I was so pleased with their patience and their willingness to occupy themselves quietly with books and toys for all that time. AJ and M&M actually rather enjoyed themselves.
We had the sweat test and the swallowing study, scheduled 4 hours apart.
Overall, I felt the day went very well.
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We had the sweat test to rule out cystic fibrosis first. Baby E didn't like having the electrodes applied to her arms or the little discs taped to them, but she did all right. She cheered up quite a bit after we were able to take them off and get her out of her warm coat.
I'm assuming that the CF test was negative, since the results were going to be back at 3pm and they told us they would call us today if it was positive. No news is good news, they said.
Baby E had to fast for at least 3 hours before the swallow study, and that wasn't as bad as I had feared. I just had time to nurse Baby E after the first test was over before we started the fast and the long wait for the second test. Except that she emphatically didn't want to nurse then--she wanted to play with the other kids.
She wanted to nurse about 30 minutes later, when she couldn't. She kept asking to nurse and fussing occasionally, but then would go back to playing or just wanting to be held. She did have a meltdown when she saw the bag of food and I wouldn't give her any, so I gave it to the radiology scheduler to keep behind the desk.
Baby E wasn't fooled in the least by the barium "hidden" in the various kinds of food and drink. I knew she wouldn't be. We were able to get her to eat enough of it to do the test anyway, though.
After the first few items, E would clamp her mouth shut and shake her head. I'd say encouragingly, "come on . . . open your mouth and eat it. No, don't spit it out . . . chew it up and swallow it." And she would, reluctantly. She did such a great job. I thought it went well--I even remembered to ask them to use a little shield to protect her ovaries from radiation.
The swallow study gave us some very helpful information. It turns out that Baby E is aspirating small amounts of liquids when she drinks. When she swallows thin liquids, some of it goes down her airway toward her lungs instead of down her throat to her stomach. When it reaches the place where the tube branches out to either lung, she coughs. So when she coughs while drinking water, that is what's happening.
The aspiration could certainly be related to her constant congestion. Since it's only trace amounts, they said that at this point we're not going to worry about how she's doing with breastmilk. But we have to thicken any other beverage we give her--no more plain water.
The EGD next Friday should give more information that will be helpful. Depending on what we find out with the EGD, we may end up doing another barium test looking at the upper GI next week.
Hopefully the aspiration is connected to the suspected reflux and will resolve on its own once the reflux is treated.
Again, I was so impressed with the staff at the Children's Hospital. Both the person who did the sweat study and the speech-language pathologist (SLP) who did the swallow study were great. They took the time to explain things and answer questions in a very detailed way.
After the tests were done, the SLP offered to let us use his eating lab for our lunch. We were all hungry by then, as I hadn't wanted to feed everyone else in front of Baby E while she was waiting for her test. We had our pick of 4 different high chairs for Baby E, and the rest of us sat at the little table in the pleasant room.
As we were sitting there eating, our GI specialist (the nurse practitioner) came in. She had heard we were there and came over to see us. She gave me a big hug and talked to me about the results we had so far and what to expect with the coming tests and procedures. That was really helpful.
Tonight we're going to start Baby E on her first dose of the PPI (proton pump inhibitor) for reflux. I'm hoping that will make a big difference in her symptoms.
We had the sweat test and the swallowing study, scheduled 4 hours apart.
Overall, I felt the day went very well.
################
We had the sweat test to rule out cystic fibrosis first. Baby E didn't like having the electrodes applied to her arms or the little discs taped to them, but she did all right. She cheered up quite a bit after we were able to take them off and get her out of her warm coat.
I'm assuming that the CF test was negative, since the results were going to be back at 3pm and they told us they would call us today if it was positive. No news is good news, they said.
Baby E had to fast for at least 3 hours before the swallow study, and that wasn't as bad as I had feared. I just had time to nurse Baby E after the first test was over before we started the fast and the long wait for the second test. Except that she emphatically didn't want to nurse then--she wanted to play with the other kids.
She wanted to nurse about 30 minutes later, when she couldn't. She kept asking to nurse and fussing occasionally, but then would go back to playing or just wanting to be held. She did have a meltdown when she saw the bag of food and I wouldn't give her any, so I gave it to the radiology scheduler to keep behind the desk.
Baby E wasn't fooled in the least by the barium "hidden" in the various kinds of food and drink. I knew she wouldn't be. We were able to get her to eat enough of it to do the test anyway, though.
After the first few items, E would clamp her mouth shut and shake her head. I'd say encouragingly, "come on . . . open your mouth and eat it. No, don't spit it out . . . chew it up and swallow it." And she would, reluctantly. She did such a great job. I thought it went well--I even remembered to ask them to use a little shield to protect her ovaries from radiation.
The swallow study gave us some very helpful information. It turns out that Baby E is aspirating small amounts of liquids when she drinks. When she swallows thin liquids, some of it goes down her airway toward her lungs instead of down her throat to her stomach. When it reaches the place where the tube branches out to either lung, she coughs. So when she coughs while drinking water, that is what's happening.
The aspiration could certainly be related to her constant congestion. Since it's only trace amounts, they said that at this point we're not going to worry about how she's doing with breastmilk. But we have to thicken any other beverage we give her--no more plain water.
The EGD next Friday should give more information that will be helpful. Depending on what we find out with the EGD, we may end up doing another barium test looking at the upper GI next week.
Hopefully the aspiration is connected to the suspected reflux and will resolve on its own once the reflux is treated.
Again, I was so impressed with the staff at the Children's Hospital. Both the person who did the sweat study and the speech-language pathologist (SLP) who did the swallow study were great. They took the time to explain things and answer questions in a very detailed way.
After the tests were done, the SLP offered to let us use his eating lab for our lunch. We were all hungry by then, as I hadn't wanted to feed everyone else in front of Baby E while she was waiting for her test. We had our pick of 4 different high chairs for Baby E, and the rest of us sat at the little table in the pleasant room.
As we were sitting there eating, our GI specialist (the nurse practitioner) came in. She had heard we were there and came over to see us. She gave me a big hug and talked to me about the results we had so far and what to expect with the coming tests and procedures. That was really helpful.
Tonight we're going to start Baby E on her first dose of the PPI (proton pump inhibitor) for reflux. I'm hoping that will make a big difference in her symptoms.
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Posted by purple_kangaroo at 5:47 PM[Permanent link]
4 Comments:
I am glad the testing went well and they didn't call you yet about the sweat test, no news is good news right! That is interesting to find out about the aspiration... at least it is mild though and may be better with her going on the proton pump inhibitor. Which one did they put her on? Just curious 3 of us in this family have reflux (so far, seems like someone is diagnosed every year)and we are all on a different med! I really am glad you continue to be so happy with the gi drs there, I really love them to and have always had great experiences everyone always seems so accomadating when we go there. That is so nice the NP came in and gave you a hug she has done that with me when the kids were getting tested a lot it is so nice to feel the dr is getting so involved and that NP really does!
Your whole family deserves a standing ovation for taking these kinds of days in stride and with aplomb. Big hugs to you all.
I'm so glad that no news is good news!
How are you feeling? I was a bit worried about how you'd manage to get through the long day.
So glad to hear that your day went so well! Congrats to the older girls for being so patient and helpful. It's so wonderful to hear about helpful doctors and (some) answers, finally!! Hope these lead to useful solutions.
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