Well, we were not sure if the surgery was going to fix the intestinal bleeding. It appears there may be at least another cause for some bleeding. It is not in the amount that she was experiencing previously so we may have resolved one issue. She is also fighting a bug that Hope has had for at least a week. We are having a hard time keeping anything down her so we moved to electrolyte water by way of a slow feed. We are trying to keep her from dehydration. If we didn't have the g-tube, Faith would probably be in the hospital, but we are able to handle this issue without their help.
Now it becomes an issue of trying to figure out what is causing this problem. She has absurd amounts of gas being creating which is the cause of her inability to keep food down. We need to get her over this sickness and get the food going again. These bowel troubles have caused her to lose some weight so we really desire an answer for this issue.
This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
Saturday, November 19, 2011
Monday, November 14, 2011
Out of the Hospital
We did make it out of the hospital, but it was by Monday (a week ago), not Sunday as I had hoped. Faith is doing much better and does not appear to be having any pain during her bowel movements. We still have the crazy gas problems which might be accentuated by fighting a little bug. Faith's big sis Hope has been having some stomach pains and feeling a little bad, but not horrible. Faith seems as though she may be fighting it as well. She has definitely improved from yesterday to today so maybe she will get over this and the gas soon. We are beginning to give her regular food to see if that makes a difference.
Sunday, November 6, 2011
Hospital Stay Continues...
Faith does has a way of drawing a crowd even if it is just her family. |
She really love to grab faces and hair...big sister Hope plays along. |
She likes to show off her IV, or just yank it out if she can. |
Feeling great today...someone want to play ball? |
Friday, November 4, 2011
Ambulance Trip and Hospital
Just when we thought the hospital was a not so fond memory....we're back. On Wednesday, Faith had another bleeding episode except this time the blood poured out of her intestines quickly and in a fairly significant way. Jesi had walked to a therapy appointment and hence did not have the van. She would have just driven to the hospital, but she wisely had them call an ambulance since walking would have taken way too long. The blood came out in a large enough quantity that it poured out of her diaper and pooled on the floor.
We are now in the hospital and had a test yesterday for Meckel's. Meckel's can randomly bleed in your small intestines. The test was negative so the next option became surgery to physically look at the small intestines. So we opted for the surgery which we had this morning at 9. The surgeon found a growth on her small intestines and removed it. Gross, but it was squirting blood so we think it was the culprit. He was easily able to get it out and close her up without removing a section of intestine which is good. He also removed her appendix while he was at it so I guess we won't have to worry about any infection there. He did mention that he has never seen anything like it...surprise, our daughter has something that a doctor has never seen. Faith is recovering nicely, and we hope to be out of here by Sunday. We are also hopeful that this could have been the cause of some of her pain while being fed. By God's grace, we will see a great improvement in her feeding.
On a positive note for Hope (our 5 year old), she had to witness the bloodloss episode, but got to ride in the front seat of the ambulance which she thought was so cool.
We are now in the hospital and had a test yesterday for Meckel's. Meckel's can randomly bleed in your small intestines. The test was negative so the next option became surgery to physically look at the small intestines. So we opted for the surgery which we had this morning at 9. The surgeon found a growth on her small intestines and removed it. Gross, but it was squirting blood so we think it was the culprit. He was easily able to get it out and close her up without removing a section of intestine which is good. He also removed her appendix while he was at it so I guess we won't have to worry about any infection there. He did mention that he has never seen anything like it...surprise, our daughter has something that a doctor has never seen. Faith is recovering nicely, and we hope to be out of here by Sunday. We are also hopeful that this could have been the cause of some of her pain while being fed. By God's grace, we will see a great improvement in her feeding.
On a positive note for Hope (our 5 year old), she had to witness the bloodloss episode, but got to ride in the front seat of the ambulance which she thought was so cool.
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