Here is an update on Reece... About a year ago when Reece was in ICU she was diagnosed with Sweets Syndrome... it was sores that came up on her and they were very tender.... she had them on her cheeks, arms and legs. She still has some discoloration on her knees from them... you will notice it in some of her pictures... almost looks like a bruise. They said it was b/c of her respiratory infection... Fast Forward to the past 4/5 weeks. In early September her oxygen level was in the 70s when the nurse came to check on her. We ended up in the hospital for a couple of days and she tested negative for everything and her lungs were clear. She had diarrhea, some of which was bloody and we attributed it to teething. she was discharged on oxygen, with really no answers as to why her levels were low. She was given some meds that was to help the diarrhea and she was going to have a scope done. Then a few days ago we just felt she needed to go to the ER, she has having a little harder time breathing (we had her on 2 liters of oxygen driving there) and her belly looked different. They thought she had a bowel obstruction, but her CT was negative for that. They have concluded, based on the CT, symptoms and blood work that she has IBD...Inflamed Bowel Disease. They have given her a steroid to help with her belly and her oxygen levels have gotten much better. Her lungs were/are having problems taking deep breaths b/c of the inflamed large bowel .... During the 4 weeks in between hospitalizations, her poops never really got better. They said this is something she will always have and in fact IBD and Sweets go hand in hand.. I just wanted to put this out there in case any of your children have belly or breathing issues with no obvious reason why (cough, mucus, etc). Hopefully we can get her off oxygen soon and this will be our only hospitalization this winter... KNOCK ON WOOD!
Posted on: Thu, 16 Oct 2014 02:44:09 +0000
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