No News

Sorry for the late post but we were both tired yesterday. I also was trying to wait until I knew something else but I will write what I know so far. Yesterday they started the upper GI at 830 and we still have not heard full report. The little bit I did hear yesterday varies. I know some barium backed up into stomach which from what I understand is normal but usually your stomach is supposed to squeeze stuff back out. The pediatrician yesterday seemed to think that it was a temporary thing from a virus and seemed to think it would improve. They may try a medicine to make it contract in the meantime. They are also planning on doing gastric enema soon to check out the constipation issue. Please pray that these tests will reveal an answer and that there will be a good treatment for them. Pray that after all this she will become willing and able to eat solids and thrive. Thanks for all your prayers.

Still Waiting

We are still here waiting on a x ray and upper GI to be done. Surgeon said that he thought her bowel was not working right or was functional obstruction. I guess he could be wrong though. I am hoping that when they look they find something else and fixable. Please pray they find what is wrong with her and that there is a treatment for it. Otherwise, she is feeling more like herself. Thank you for your prayers.

Tests Scheduled

Not too much to report today. She was Savannah again today, alert and doing what she always does- read, color, and watch movies. She seemed to tolerate the feeds yesterday that went straight into the intestine as far as we know. They raised the speed a little today by 5 ml to see how she does. The plan is to go to 20 ml tomorrow if she still does well. They are planning on doing some more GI images tomorrow or Tuesday whichever day they can get her in. I believe they are doing an upper and lower GI series. If the stomach is not emptying I think she has to be fed mainly through tube going to her intestine. I hope that is not it because she would not be able to eat many solids. Hopefully we can find whatever it is though.

Feeling Better

She is starting to feel a little better today. She is getting more like her talkative self. She sat up and read books and watched movies all day. She blew some bubbles to help her lungs. They were not letting her drink or eat all day to test her stomach out and find out if it is the problem. She was not happy about it and kept asking for something. She also said she was hungry but who knows if she would have really eaten. Hopefully after this trip she will have started eating again. Her cough was a lot more productive today and the new antibiotic seems to help. They are testing her for immuno deficiency. If she has no fever for 2 days they will wean her off the other 2 antibiotics and just keep her on the new strong one. That is all that I have to report today.

Still Looking

We are still here looking for answers. The good thing is that the pediatrician on her case this week seems determined to find an answer for her stomach issues. Nothing much is showing up on blood or stool labs. X ray is basically showing air and stool. She said it could be one of 3 things - the constipation since there was so much of it, an obstruction so small they cannot see it, or the stomach not emptying properly which is what I believe they are leaning towards. They are not doing a tube feeding tonight and I think are doing an upper GI test tomorrow. The next tube feeding they do - I think they are bypassing the stomach and going lower. If she does well and not get air in stomach or full belly then they will know stomach is the problem. From what I read online, if that is the problem she would have to eat smaller meals, have a tube perm in stomach, and maybe take meds. She was still running a fever today although on 2 antibiotics so they are bringing in infectious disease doctor. They also ran labs to check for infection in blood, mrsa. We are hoping that none of these are present and maybe her body is just taking longer to react to medicine. They started a 3rd antibiotic that they would have to use if she had mrsa just in case. Thank you for your continued prayers and assistance.

Main Concern

They started suctioning her stomach again today due to her stomach going back up a little. She had to have some oxygen this morning around 5. They are thinking the stomach being distended a little again is part of that. I am still concerned about the eating and stomach issues but I think my main concern right now is the pneumonia and the fact that she is still having fevers from it although she is on 2 antibiotics. Please continue to pray for her getting the pneumonia gone completely and also what is going on with the stomach.

Waiting Around

The doctors had thought that she was all cleaned out because they suctioned so much out and she had 6 bms but I tried to tell them based on their history that I did not think that she was. For those of you who do not know her full history she has always thrown up when constipated real bad and if she cannot go to the bathroom. They had started the tube feeding back last night because they thought she was cleaned out. Well today she threw up and it smelled and looked like bm like I had told them it had been looking. Sorry a little too much info. Anyway, the nurse came in and said it smells like poop. So the doctor saw it. Right now they are taking her off the tube until she is cleaned out and are giving her a suppository. I plan on asking if maybe her body had gotten adjusted to the laxative that she takes. It is possible that it had and that is why she got so backed up. They are still going to test her for something called Herschsprung Disease which is where some nerve cells in colon do not work properly and causes constipation. It would be a good thing if it was just this backed up problem with a good reason for it and maybe a new medicine for the problem.