Aug 31: Mahiya was yawning a lot, took her to standing lab. (Hate going to the ER as they want to weigh her and get vitals before accessing her port and she freaks out as soon as we enter the ER. She will be screaming the whole time.) Standing lab is better as it is the same nurse all the time and she knows Mahiya very well. She will have everything ready before we enter the room, she will access her and draw blood in couple of minutes. Ammonia was 163. Did not expect that!!. I asked the doctor to transfer us directly to the floor bypassing ER and she did. Mahiya was started on D10 and lipids. Usually our team starts lipid above 150. Evening 120. Next morning 63. Evening 48. Friday morning when the lab person came to draw blood it was not drawing. Again her tissues got swollen. Had to take the needle out. Hot pack helped. Accessed again in couple of hours to draw blood for ammonia and was locked. Ammonia 47. In the evening again 47, they let us home. ....... got home for the long weekend!!! for how long ????
We have totally lost confidence in us catching Mahiya's ammonia early. Every time we go for a clinical visit thinking she is fine, but her ammonia would be above 100. So these days we rush to ER even if she gets a little fuzzy.
Sep 4, 2011: Mahiya was kind of little dull in the afternoon. Then had a couple of hours of good nap. When she woke up at 9.30 PM, she was very cranky. We did not waste any time and rushed to ER. At midnight ammonia 73. But her white Blood count was elevated 23 (normal below 17) So the doctor wanted to culture her urine to see if she had any bladder infection. I was so scared of catheter and asked for bag. But the doctor said bag is no good, it could give false positive and there will be a lot of process after that. So they insisted catheter. We said OK half hearted. But it went very quick. They did an ultrasound to see if her bladder had some urine and then did the catheter, it took less than a minute. A 45 minutes test said her urine was clean. And a culture has been started on the urine as well. It will take 2 days . Mahiya was admitted not because of her ammonia but her WBC. Chances are there that any infection that she is fighting could rise her ammonia. D10 was started. Ammonia in the morning was 68 and WBC 16. So fluid was stopped. Ammonia at 2.00 PM was 42. Got home at 4.00 PM.
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