Monday

This morning Alex was considered stable. The Drs opted to proceed with the scheduled endoscopy and colonoscopy. At this point the benefits out weighed the risks. He was again placed under general anesthesia and did great. He was int-abated to aid his breathing. He was put under deeper and so it did take a little longer for him to come out of it and he remained very sleepy for the rest of the day. The initial results of the scopes look great…nothing abnormal. The Dr took four biopsies which will be done in-house and should be back by tomorrow. Alex did much better with maintaining his blood sugar levels and only had to have the dextrose IV line for half the day. They tried to do a sweat test on him to check his chemical balance for cystic fibrosis but because he has no fat he did not sweat. Most likely they will not try and repeat this test because they were able to get his newborn metabolic screening results from Richmond which showed negative. We were given some potentially good news today. There is a study being done at Duke University about a condition called FPIES. I will a website at the bottom with more information on it. The Drs have to wait for the biopsy results to come back tomorrow before proceeding with more testing for FPIES. Alex appears to be a textbook case for this rare syndrome with most if not all the presenting symptoms. Tonight Alex’s heart rate is dropping to an alarming rate for short periods of time and then raising on its on again. up when the stickers were placed so there wasn’t an accurate reading because he wasn’t asleep. Well, it was accurate but not for the dips we were seeing on the monitor.There was an EKG preformed however they woke him This seems to only be happening when he is asleep but it is concerning. The attending came in and checked him over as well as calling in the PICU Dr. They are consulting now but may decide to just watch him for the time being. The nurses here are great. His admitting nurse from last week came in today after being off for a few days. She knew there was no way we had been discharged so she came looking for us…she said she had to see her baby after all he had been through. The attending that has been on for the past few days (Dr. Kamat) is just awesome. its so nice to see drs who actually care about the patients and not just them but their families too. She was supposed to get off at 8 today but hung around to keep an eye on Alex’s heart rate. Dr. Foreman and Dr. Brown are great too!! The whole GI team they have here are very nice. They all come in and sit down with me…explain what has happened, is happening, and will happen…from day-to-day.

http://www.kidswithfoodallergies.org/resourcespre.php?id=99

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